%0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e69398 %T Sustainability and Time Trends in Electronic Patient-Reported Outcome Assessment in Routine Cancer Care: Systematic Scoping Review and Follow-Up Survey %A Hubel,Niclas J %A Vorbach,Samuel M %A de Ligt,Kelly M %A Rathgeber,Ines S %A Beyer,Katharina %A Wintner,Lisa M %A Faller,Barbara %A Nemec,Jasmin %A Holzner,Bernhard %A Sztankay,Monika %A Lehmann,Jens %+ University Hospital of Psychiatry II, Medical University of Innsbruck, Anichstrasse 35, Innsbruck, 6020, Austria, 43 5050481551, jens.lehmann@i-med.ac.at %K patient-reported outcome measures %K cancer, clinical routine %K health-related quality of life %K quality of care %K mobile applications %K digital technology %D 2025 %7 25.4.2025 %9 Review %J J Med Internet Res %G English %X Background: Routine electronic assessment of patient-reported outcomes (ePROs) can improve cancer care; yet, its implementation in routine practice and long-term sustainability remain unclear. Understanding these aspects is critical to advancing the field. Objective: To review and describe the past and current status, time trends, and long-term sustainability of clinical ePRO applications in routine oncology care. Methods: We conducted a systematic review of publications on ePRO use in oncology care up to December 31, 2023, searching PubMed and Web of Science and extracting data on clinical ePRO applications. We included peer-reviewed studies including patients with cancer using ePRO assessments in clinical practice, excluding research letters and conference abstracts. Data from the review were analyzed using descriptive statistics and univariate regression models to evaluate time trends, with year of publication as the predictor. A follow-up survey was sent to authors of published ePRO applications to assess their current use of the application or reasons for discontinuation. Responses from the follow-up survey were analyzed descriptively. Results: For the review, we screened 2933 references, and 303 met inclusion criteria. Results showed that Europe was the most common region (n=141, 46.5%), and study populations consisted mostly of adult patients (n=276, 91.1%) under chemotherapy treatment (n=124, 40.9%) assessed in an outpatient setting (n=261, 86.1%). The EORTC (European Organisation for Research and Treatment of Cancer; n=77, 25.4%) and PRO-CTCAE (Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events) questionnaires (n=65, 21.5%) were most frequently integrated into ePRO applications. In the univariate analysis, we found that publications increased significantly over time (2003-2023, P<.001). Trends showed a rise in mobile app use (odds ratio [OR] 1.211, P<.001), remote assessments (OR 1.094, P=.002), and feedback provided to patients (OR 1.060, P=.04). Of the 303 studies, 221 unique clinical ePRO applications were identified, merging publications at the application level. The follow-up survey had a 35.3% response rate (78/221), with 61.1% of ePRO applications still in use, lasting a median of 5 years. The most common reason for discontinuation was a lack of funding and resources (42.9%, 12/28). Conclusions: The field of ePRO assessment in oncology is rapidly evolving, with a shift toward remote, app-based tools and a growing emphasis on providing feedback to patients. We present, for the first time, data on the sustainability of ePRO use in routine care. While our findings offer valuable insights, they should be interpreted in light of potential response bias in the follow-up survey. Several ePRO applications remain in active use, highlighting potential for long-term integration into clinical practice. However, financial constraints, limited reimbursement models, and challenges with workflow integration continue to hinder broader and more sustainable adoption. Addressing these barriers will be essential to support the continued use of ePROs in clinical care. %M 40280556 %R 10.2196/69398 %U https://www.jmir.org/2025/1/e69398 %U https://doi.org/10.2196/69398 %U http://www.ncbi.nlm.nih.gov/pubmed/40280556 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e60681 %T A WeChat-Based Decision Aid Intervention to Promote Informed Decision-Making for Family Members Regarding the Genetic Testing of Patients With Colorectal Cancer: Randomized Controlled Trial %A Li,Huanhuan %A Zhao,Yanjie %A Li,Wei %A Wang,Wenxia %A Zhi,Shengze %A Wu,Yifan %A Zhong,Qiqing %A Wang,Rui %A Sun,Jiao %+ , School of Nursing, Jilin University, Number 965, Xinjiang Street, Changchun, Jilin, 130021, China, 86 13844879177, sunjiao@jlu.edu.cn %K decision aid %K genetic testing %K hereditary colorectal cancer %K informed decision-making %K RCT %K WeChat based %D 2025 %7 21.4.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Identifying patients with inherited colorectal cancer (CRC) syndromes offers many potential benefits. However, individuals often experience decisional conflict regarding genetic testing for CRC, and the uptake rate remains low. Given the growing popularity of genetic testing and the increasing demands on genetic service providers, strategies are needed to promote informed decision-making, increase genetic testing uptake among at-risk individuals, and ensure the rational use of genetic service resources. Objective: This study aims to determine whether a decision aid (DA) tool could promote informed decision-making among family members regarding the genetic testing of a patient with CRC. Methods: A single-center, parallel-group, randomized controlled trial was conducted. We randomized 82 family members of patients with CRC, who were involved in major medical decision-making for the patient, to either a DA intervention or usual care. The primary outcome was informed decision-making, assessed through measures of knowledge, decisional conflict, decision self-efficacy, and preparation for decision-making. Secondary outcomes included patients’ uptake of genetic counseling and testing, participants’ CRC screening behavior, healthy lifestyle scores, anxiety and depression levels, quality of life, and satisfaction with the intervention. Data were collected at baseline (T0), after the intervention (T1), and 3 months after the baseline survey (T2). The DA intervention and outcome assessments at T1 and T2 were delivered via WeChat. The effects of the intervention were analyzed using generalized estimating equation models. Results: Statistically significant improvements were observed in knowledge (T1: β=2.049, P<.001; T2: β=3.317, P<.001), decisional conflict (T1: β=–11.660, P<.001; T2: β=–17.587, P<.001), and decision self-efficacy (T1: β=15.353, P<.001; T2: β=22.337, P<.001) in the DA group compared with the usual care group at both T1 and T2. Additionally, the DA group showed significantly greater improvement in processed and red meat intake (β=–1.494, P<.001) at T1 and in healthy lifestyle scores (β=1.073, P=.03) at T2. No differences were found between the groups for other outcomes. Conclusions: A DA tool may be a safe, effective, and resource-efficient approach to facilitate informed decision-making about genetic testing. However, the current DA tool requires optimization and further evaluation—for example, by leveraging more advanced technology than WeChat to develop a simpler and more intelligent DA system. Trial Registration: Chinese Clinical Trial Registry ChiCTR2100048051; https://www.chictr.org.cn/showproj.html?proj=129054 %M 40258273 %R 10.2196/60681 %U https://www.jmir.org/2025/1/e60681 %U https://doi.org/10.2196/60681 %U http://www.ncbi.nlm.nih.gov/pubmed/40258273 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 11 %N %P e65566 %T Ethical Design of Data-Driven Decision Support Tools for Improving Cancer Care: Embedded Ethics Review of the 4D PICTURE Project %A Bak,Marieke %A Hartman,Laura %A Graafland,Charlotte %A Korfage,Ida J %A Buyx,Alena %A Schermer,Maartje %A , %+ Institute of History and Ethics in Medicine, Department of Preclinical Medicine, TUM School of Medicine and Health, Technical University of Munich, Ismaninger Street 22, München, 81675, Germany, 49 43480533, marieke.bak@tum.de %K shared decision-making %K oncology %K IT %K ethics %K decision support tools %K big data %K medical decision-making %K artificial intelligence %D 2025 %7 10.4.2025 %9 Original Paper %J JMIR Cancer %G English %X Oncology patients often face complex choices between treatment regimens with different risk-benefit ratios. The 4D PICTURE (Producing Improved Cancer Outcomes Through User-Centered Research) project aims to support patients, their families, and clinicians with these complex decisions by developing data-driven decision support tools (DSTs) for patients with breast cancer, prostate cancer, and melanoma as part of care path redesign using a methodology called MetroMapping. There are myriad ethical issues to consider as the project will create data-driven prognostic models and develop conversation tools using artificial intelligence while including patient perspectives by setting up boards of experiential experts in 8 different countries. This paper aims to review the key ethical challenges related to the design and development of DSTs in oncology. To explore the ethics of DSTs in cancer care, the project adopted the Embedded Ethics approach—embedding ethicists into research teams to sensitize team members to ethical aspects and assist in reflecting on those aspects throughout the project. We conducted what we call an embedded review of the project drawing from key literature on topics related to the different work packages of the 4D PICTURE project, whereas the analysis was an iterative process involving discussions with researchers in the project. Our review identified 13 key ethical challenges related to the development of DSTs and the redesigning of care paths for more personalized cancer care. Several ethical aspects were related to general potential issues of data bias and privacy but prompted specific research questions, for instance, about the inclusion of certain demographic variables in models. Design methodology in the 4D PICTURE project can provide insights related to design justice, a novel consideration in health care DSTs. Ethical points of attention related to health care policy, such as cost-effectiveness, financial sustainability, and environmental impact, were also identified, along with challenges in the research process itself, emphasizing the importance of epistemic justice, the role of embedded ethicists, and psychological safety. This viewpoint highlights ethical aspects previously neglected in the digital health ethics literature and zooms in on real-world challenges in an ongoing project. It underscores the need for researchers and leaders in data-driven medical research projects to address ethical challenges beyond the scientific core of the project. More generally, our tailored review approach provides a model for embedding ethics into large data-driven oncology research projects from the start, which helps ensure that technological innovations are designed and developed in an appropriate and patient-centered manner. %M 40209225 %R 10.2196/65566 %U https://cancer.jmir.org/2025/1/e65566 %U https://doi.org/10.2196/65566 %U http://www.ncbi.nlm.nih.gov/pubmed/40209225 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e56092 %T Urologists’ Estimation of Online Support Group Utilization Behavior of Their Patients With Newly Diagnosed Nonmetastatic Prostate Cancer in Germany: Predefined Secondary Analysis of a Randomized Controlled Trial %A Karschuck,Philipp %A Groeben,Christer %A Koch,Rainer %A Krones,Tanja %A Neisius,Andreas %A von Ahn,Sven %A Klopf,Christian Peter %A Weikert,Steffen %A Siebels,Michael %A Haseke,Nicolas %A Weissflog,Christian %A Baunacke,Martin %A Thomas,Christian %A Liske,Peter %A Tosev,Georgi %A Benusch,Thomas %A Schostak,Martin %A Stein,Joachim %A Spiegelhalder,Philipp %A Ihrig,Andreas %A Huber,Johannes %+ Department of Urology, University Hospital Heidelberg, Im Neuenheimer Feld 420, Heidelberg, 69120, Germany, 49 6221 56 364, philipp.karschuck@med.uni-heidelberg.de %K peer support %K prostate cancer %K online support %K health services research %K randomized controlled trial %K decision aid %D 2025 %7 7.4.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Due to its high incidence, prostate cancer (PC) imposes a burden on Western societies. Individualized treatment decision for nonmetastatic PC (eg, surgery, radiation, focal therapy, active surveillance, watchful waiting) is challenging. The range of options might make affected persons seek peer-to-peer counseling. Besides traditional face-to-face support groups (F2FGs), online support groups (OSGs) became important, especially during COVID-19. Objective: This study aims to investigate utilization behavior and physician advice concerning F2FGs and OSGs for patients with newly diagnosed PC. We hypothesized greater importance of OSGs to support treatment decisions. We assumed that this form of peer-to-peer support is underestimated by the treating physicians. We also considered the effects of the COVID-19 pandemic. Methods: This was a secondary analysis of data from a randomized controlled trial comparing an online decision aid versus a printed brochure for patients with nonmetastatic PC. We investigated 687 patients from 116 urological practices throughout Germany before primary treatment. Of these, 308 were included before and 379 during the COVID-19 pandemic. At the 1-year follow-up visit, patients filled an online questionnaire about their use of traditional or online self-help, including consultation behaviors or attitudes concerning initial treatment decisions. We measured secondary outcomes with validated questionnaires such as Distress Thermometer and the Patient Health Questionnaire-4 items to assess distress, anxiety, and depression. Physicians were asked in a paper-based questionnaire whether patients had accessed peer-to-peer support. Group comparisons were made using chi-square or McNemar tests for nominal variables and 2-sided t tests for ordinally scaled data. Results: Before COVID-19, 2.3% (7/308) of the patients attended an F2FG versus none thereafter. The frequency of OSG use did not change significantly: OSGs were used by 24.7% (76/308) and 23.5% (89/308) of the patients before and during COVID-19, respectively. OSG users had higher levels of anxiety and depression; 38% (46/121) reported OSG as helpful for decision-making. Although 4% (19/477) of OSG nonusers regretted treatment decisions, only 0.7% (1/153) of OSG users did (P=.03). More users than nonusers reported that OSGs were mentioned by physicians (P<.001). Patients and physicians agreed that F2FGs and OSGs were not mentioned in conversations or visited by patients. For 86% (6/7) of the patients, the physician was not aware of F2FG attendance. Physicians underestimated OSG usage by 2.6% (18/687) versus 24% (165/687) of actual use (P<.001). Conclusions: Physicians are more aware of F2FGs than OSGs. Before COVID-19, F2FGs played a minor role. One out of 4 patients used OSGs. One-third considered them helpful for treatment decision-making. OSG use rarely affects the final treatment decision. Urologists significantly underestimate OSG use by their patients. Peer-to-peer support is more likely to be received by patients with anxiety and depression. Comparative interventional trials are needed to recommend peer-to-peer interventions for suitable patients. Trial Registration: German Clinical Trials Register DRKS-ID DRKS00014627; https://drks.de/search/en/trial/DRKS00014627 %M 40194272 %R 10.2196/56092 %U https://www.jmir.org/2025/1/e56092 %U https://doi.org/10.2196/56092 %U http://www.ncbi.nlm.nih.gov/pubmed/40194272 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e66275 %T The Effect of Nurse Navigators in Digital Remote Monitoring in Cancer Care: Case Study Using Structural Equation Modeling %A Minvielle,Etienne %A Perez-Torrents,Joel %A Salma,Israa %A Aegerter,Philippe %A Ferrua,Marie %A Ferté,Charles %A Leleu,Henri %A Mathivon,Delphine %A Sicotte,Claude %A Di Palma,Mario %A Scotté,Florian %+ Interdisciplinary Department for the Organization of Patient Pathways, Gustave Roussy, 114 rue Edouard Vaillant, Villejuif, 94800, France, 33 0662102533, Etienne.MINVIELLE@gustaveroussy.fr %K digital remote monitoring %K nurse navigators %K patient care %K oncology %K toxicity %K patient satisfaction %K hospitalization %D 2025 %7 28.3.2025 %9 Short Paper %J J Med Internet Res %G English %X Background: The purpose of digital remote monitoring (DRM) is improving cancer care management. However, its effectiveness largely depends on the role of nurse navigators (NNs) within these systems to process data and lead action. Objective: This study aims to fill gaps in our understanding of the role of NNs within a specific system, drawing on the Cancérologie parcours région Ile-de-France (CAPRI) DRM program applied to oncology patients. Methods: The CAPRI DRM, targeting patients taking oral anticancer agents, combines digital interfaces with NN interventions. A phase 3 randomized controlled trial involving 559 patients assessed its safety and efficacy, with the primary end point being the relative dose intensity. This report focuses on patients in the CAPRI arm, evaluating the impact of NN interventions on outcomes such as toxicity, hospitalization, and emergency visits. Data on patient characteristics, NN interventions, and patient satisfaction surveys were analyzed using structural equation modeling. Results: The study included 187 patients. Patient characteristics were significantly correlated with outcomes. Across all the models we used, the quality of NN interventions was consistently associated with higher patient satisfaction, with correlation coefficients ranging from 0.332 (95% CI 0.154-0.510; P<.001) to 0.366 (95% CI 0.182-0.550; P<.001). The number of grade ≥3 toxicity events correlated positively with NN referrals to oncologists. Hospitalization length was positively related to NN referral (coefficient 0.102, 95% CI 0.051-0.153; P<.001) and inversely to NN advice (coefficient –0.045, 95% CI –0.096 to 0.006; P=.08). Emergency visits showed a negative correlation with NN actions (coefficient –0.478, 95% CI –0.923 to 0.033; P=.04) and a positive correlation with NN calls and referrals (coefficient 0.516, 95% CI 0.069-0.963; P=.02). Conclusions: This study shows the central role of NNs in making DRM effective. Despite the study’s limitations, these results support the design of DRM as a hybrid model of automated digital tools and human support. Future research should explore the applicability of such a DRM model in various clinical settings to clarify the optimal association between automated systems and NN expertise. Trial Registration: ClinicalTrials.gov NCT02828462; https://www.clinicaltrials.gov/study/NCT02828462 %M 40153795 %R 10.2196/66275 %U https://www.jmir.org/2025/1/e66275 %U https://doi.org/10.2196/66275 %U http://www.ncbi.nlm.nih.gov/pubmed/40153795 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e67175 %T Co-Design of a Depression Self-Management Tool for Adolescent and Young Adult Cancer Survivors: User-Centered Design Approach %A Murphy,Karly M %A Glock,Rachel %A Victorson,David %A Reddy,Madhu %A Birken,Sarah A %A Salsman,John M %+ Department of Psychology, East Carolina University, 1000 E 5th St, Greenville, NC, 27858, United States, 1 2527374638, murphykar22@ecu.edu %K adolescent and young adult %K cancer survivorship %K depressive symptoms %K self-management %K co-design workshops %K user-centered design %K thematic analysis %K intervention tailoring %K digital mental health %K evidence-based intervention %K digital tools %K psychosocial support %D 2025 %7 24.3.2025 %9 Original Paper %J JMIR Form Res %G English %X Background: Adolescent and young adult (AYA) cancer survivors are more likely to experience elevated depressive symptoms than older survivors and healthy age-matched peers. Despite the elevated risk of depressive symptoms in AYA cancer survivors and the existence of evidence-based interventions to address depression, it is unclear whether AYA cancer survivors can access support services. Digital tools are a potential solution to overcoming barriers to AYA cancer survivors’ unmet needs for psychosocial support, but they have not been tailored to the needs and preferences of this unique population. Objective: This study engaged AYA cancer survivors and their providers in the concept generation and ideation step of the user-centered design process through online co-design workshops. The goal was to generate concepts and ideas for a digital depression self-management tool tailored to AYA cancer survivors. Methods: We conducted 5 co-design workshops—4 with AYA cancer survivors and 1 with providers who serve them. Participants were asked to provide feedback on an existing digital mindfulness course using an “I like, I wish, I wonder” framework. Then, participants were asked “How might we...” questions focused on brainstorming ideas for how the digital tool might work. Participants brainstormed responses independently and then worked as a group to categorize and expand on their ideas. Co-design workshops were autotranscribed using Webex (Cisco) software. Transcripts underwent thematic analysis with additional context provided by the products created during the workshop. Results: Eight AYA cancer survivors (aged 15-37 years) and 4 providers (2 oncologists and 2 social workers) participated in co-design workshops. We identified 6 themes: barriers to engagement, desired content, preferences for content delivery, preferences for interface, features, and aspects to avoid. Each theme had 2-7 subthemes that we relied upon when making design decisions for the prototype. Conclusions: Co-design workshops provided critical insights that informed the prototype development of a digital depression self-management tool tailored to AYA cancer survivors. Key takeaways that were integrated into prototype design include (1) using stories from other AYA cancer survivors to demonstrate concepts; (2) delivering content in brief lessons; and (3) using encouraging notifications, organizational tools, and reward systems to keep AYA cancer survivors engaged with the tool. Some of the themes identified in this study (eg, desired content and features) are consistent with known strategies for promoting user engagement and co-design work in other cancer survivors. However, this study extended previous research by identifying uniquely relevant strategies for tailoring to AYA cancer survivors, such as delivering content in brief sessions to overcome the time constraints AYA cancer survivors experience, providing opportunities for private expression, and maintaining an encouraging tone throughout the tool. These data were used to inform the prototype development of a digital depression self-management tool tailored to AYA cancer survivors. %M 40126551 %R 10.2196/67175 %U https://formative.jmir.org/2025/1/e67175 %U https://doi.org/10.2196/67175 %U http://www.ncbi.nlm.nih.gov/pubmed/40126551 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 11 %N %P e66801 %T Usability, Acceptability, and Barriers to Implementation of a Collaborative Agenda-Setting Intervention (CASI) to Promote Person-Centered Ovarian Cancer Care: Development Study %A Pozzar,Rachel A %A Tulsky,James A %A Berry,Donna L %A Batista,Jeidy %A Barwick,Paige %A Lindvall,Charlotta J %A Dykes,Patricia C %A Manni,Michael %A Matulonis,Ursula A %A McCleary,Nadine J %A Wright,Alexi A %K ovarian neoplasm %K ovarian cancer %K cancer %K oncology %K oncologist %K metastases %K communication %K physician-patient relations %K electronic health record %K EHR %K electronic medical record %K EMR %K implementation science %K digital %K digital health %K digital technology %K digital intervention %K mobile phone %D 2025 %7 10.3.2025 %9 %J JMIR Cancer %G English %X Background: People with advanced ovarian cancer and their caregivers report unmet supportive care needs. We developed a Collaborative Agenda-Setting Intervention (CASI) to elicit patients’ and caregivers’ needs through the patient portal before a clinic visit and to communicate these needs to clinicians using the electronic health record. Objective: We aimed to assess the usability and acceptability of the CASI and identify barriers to and facilitators of its implementation. Methods: We recruited English- and Spanish-speaking patients, caregivers, and clinicians from the gynecologic oncology program at a comprehensive cancer center. Participants used the CASI prototype and then completed individual cognitive interviews and surveys. We assessed usability with the System Usability Scale (scores range 0‐100, scores ≥70 indicate acceptable usability) and acceptability with the Acceptability of Intervention Measure and Intervention Appropriateness Measure (scores for both measures range from 1 to 5, higher scores indicate greater acceptability). Interviews were audio recorded, transcribed, and analyzed using directed content analysis. Domains and constructs from the Consolidated Framework for Implementation Research comprised the initial codebook. We analyzed survey data using descriptive statistics and compared usability and acceptability scores across patients, caregivers, and clinicians using analyses of variance. Results: We enrolled 15 participants (5 patients, 5 caregivers, and 5 clinicians). The mean System Usability Scale score was 72 (SD 16). The mean Acceptability of Intervention Measure and Intervention Appropriateness Measure scores were 3.9 (SD 1.0) and 4.1 (SD 0.8), respectively. Participants viewed the CASI content and format positively overall. Several participants appreciated the CASI’s integration into the clinical workflow and its potential to increase attention to psychosocial concerns. Suggestions to refine the CASI included removing redundant items, simplifying item language, and adding options to request a conversation or opt out of supportive care referrals. Key barriers to implementing the CASI include its complexity and limited resources available to address patients’ and caregivers’ needs. Conclusions: The CASI is usable and acceptable to patients with advanced ovarian cancer, caregivers, and clinicians. We identified several barriers to and facilitators of implementing the CASI. In future research, we will apply these insights to a pilot randomized controlled trial to assess the feasibility of comparing the CASI to usual care in a parallel group-randomized efficacy trial. %R 10.2196/66801 %U https://cancer.jmir.org/2025/1/e66801 %U https://doi.org/10.2196/66801 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e65152 %T Oncology Provider and Patient Perspectives on a Cardiovascular Health Assessment Tool Used During Posttreatment Survivorship Care in Community Oncology (Results from WF-1804CD): Mixed Methods Observational Study %A Nightingale,Chandylen L %A Dressler,Emily V %A Kepper,Maura %A Klepin,Heidi D %A Lee,Simon Craddock %A Smith,Sydney %A Aguilar,Aylin %A Wiseman,Kimberly D %A Sohl,Stephanie J %A Wells,Brian J %A DeMari,Joseph A %A Throckmorton,Alyssa %A Kulbacki,Lindsey W %A Hanna,Jenny %A Foraker,Randi E %A Weaver,Kathryn E %+ Department of Social Sciences and Health Policy, Wake Forest University School of Medicine, Medical Center Boulevard, Winston-Salem, NC, 27157, United States, 1 3367131432, cnightin@wakehealth.edu %K cancer %K cardiovascular health %K cancer survivors %K community oncology %K electronic health record integration %K provider acceptability %K patient-provider %K assessment tool %K electronic health records %K clinical decision support %K surveys %K interviews %K survivors %K Automated Heart-Health Assessment %D 2025 %7 6.3.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Most survivors of cancer have multiple cardiovascular risk factors, increasing their risk of poor cardiovascular and cancer outcomes. The Automated Heart-Health Assessment (AH-HA) tool is a novel electronic health record clinical decision support tool based on the American Heart Association’s Life’s Simple 7 cardiovascular health metrics to promote cardiovascular health assessment and discussion in outpatient oncology. Before proceeding to future implementation trials, it is critical to establish the acceptability of the tool among providers and survivors. Objective: This study aims to assess provider and survivor acceptability of the AH-HA tool and provider training at practices randomized to the AH-HA tool arm within WF-1804CD. Methods: Providers (physicians, nurse practitioners, and physician assistants) completed a survey to assess the acceptability of the AH-HA training, immediately following training. Providers also completed surveys to assess AH-HA tool acceptability and potential sustainability. Tool acceptability was assessed after 30 patients were enrolled at the practice with both a survey developed for the study as well as with domains from the Unified Theory of Acceptance and Use of Technology survey (performance expectancy, effort expectancy, attitude toward using technology, and facilitating conditions). Semistructured interviews at the end of the study captured additional provider perceptions of the AH-HA tool. Posttreatment survivors (breast, prostate, colorectal, endometrial, and lymphomas) completed a survey to assess the acceptability of the AH-HA tool immediately after the designated study appointment. Results: Providers (n=15) reported high overall acceptability of the AH-HA training (mean 5.8, SD 1.0) and tool (mean 5.5, SD 1.4); provider acceptability was also supported by the Unified Theory of Acceptance and Use of Technology scores (eg, effort expectancy: mean 5.6, SD 1.5). Qualitative data also supported provider acceptability of different aspects of the AH-HA tool (eg, “It helps focus the conversation and give the patient a visual of continuum of progress”). Providers were more favorable about using the AH-HA tool for posttreatment survivorship care. Enrolled survivors (n=245) were an average of 4.4 (SD 3.7) years posttreatment. Most survivors reported that they strongly agreed or agreed that they liked the AH-HA tool (n=231, 94.3%). A larger proportion of survivors with high health literacy strongly agreed or agreed that it was helpful to see their heart health score (n=161, 98.2%) compared to survivors with lower health literacy scores (n=68, 89.5%; P=.005). Conclusions: Quantitative surveys and qualitative interview data both demonstrate high acceptability of the AH-HA tool among both providers and survivors. Although most survivors found it helpful to see their heart health score, there may be room for improving communication with survivors who have lower health literacy. Trial Registration: ClinicalTrials.gov NCT03935282; http://clinicaltrials.gov/ct2/show/NCT03935282 International Registered Report Identifier (IRRID): RR2-https://doi-org.wake.idm.oclc.org/10.1016/j.conctc.2021.100808 %M 39854647 %R 10.2196/65152 %U https://www.jmir.org/2025/1/e65152 %U https://doi.org/10.2196/65152 %U http://www.ncbi.nlm.nih.gov/pubmed/39854647 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 11 %N %P e64611 %T Leveraging Patient-Reported Outcome Measures for Optimal Dose Selection in Early Phase Cancer Trials %A Byrom,Bill %A Everhart,Anthony %A Cordero,Paul %A Garratt,Chris %A Meyer,Tim %K clinical trials %K early phase %K dose finding %K patient-reported outcome %K PRO %K electronic patient-reported outcome %K ePRO %K PRO-CTCAE %K adverse events %K tolerability %K optimal dose %K cancer trials %K dose toxicity %K oncology %K drug development %K electronic collection %K dose level %K pharmacodynamic %K cytotoxic chemotherapy drugs %K cytotoxic %K chemotherapy drug %K life-threatening disease %K Common Terminology Criteria for Adverse Events %D 2025 %7 28.2.2025 %9 %J JMIR Cancer %G English %X While patient-reported outcome measures are regularly incorporated into phase 3 clinical trials, they have been infrequently used in early phase trials. However, the patient’s perspective is vital to fully understanding dose toxicity and selecting an optimal dose. This viewpoint paper reviews the rationale for and practical approach to collecting patient-reported outcome data in early phase oncology drug development and the rationale for electronic collection. %R 10.2196/64611 %U https://cancer.jmir.org/2025/1/e64611 %U https://doi.org/10.2196/64611 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 11 %N %P e60158 %T Challenges of Cross-Sectoral Video Consultation in Cancer Care on Patients’ Perceived Coordination: Randomized Controlled Trial %A Baygi,Fereshteh %A Bitz Trabjerg,Theis %A Jensen,Lars Henrik %A Munch Storsveen,Maria %A Wehberg,Sonja %A Sisler,Jeffrey James %A Søndergaard,Jens %A Gilså Hansen,Dorte %K randomized controlled trials %K video consultations %K outcome assessment %K patients’ satisfaction %K patients’ care coordination %K interprofessional relations %K cancer %D 2025 %7 11.2.2025 %9 %J JMIR Cancer %G English %X Background: Patients with cancer need coordinated care for both treatment and concurrent health conditions. This requires collaboration among specialists when using telemedicine services, emphasizing the importance of care continuity. Objective: This study aimed to explore the effects of cross-sectorial video consultation involving oncologists, general practitioners, and patients with cancer on patients’ perceived coordination of care, compared with usual care. Methods: This study describes the primary outcomes from a 7-month follow-up of patients in the Partnership Project, a randomized clinical trial. Patients in the intervention group were randomized to receive a “partnership consultation,” a shared video consultation with an oncologist, general practitioners, and the patient, in addition to their usual care. Questionnaires were completed for both groups at baseline and 7 months to assess the primary outcome, “global assessment of inter-sectorial cooperation,” from the Danish questionnaire “Patients’ attitude to the health care service.” The questionnaire also included 2 single items and 5 index scales, examining patients’ attitude toward cooperation in the health care system. Change in perceived global coordination from baseline to 7 months was compared between intention-to-treat groups using generalized estimating equations in a linear regression model. Results: A total of 278 participants were randomized with 1:1 allocation, with 80 patients receiving the intervention. Further, 210 patients completed the questionnaire at baseline, while 118 responded at 7-month follow-up. The estimated difference in the primary outcome between usual care (−0.13, 95% CI −0.38 to 0.12) and intervention (0.11, 95% CI −0.11 to 0.34) was 0.24 (95% CI −0.09 to 0.58) and not statistically significant (P=.15). Conclusions: Low rates of intervention completion and high levels of missing data compromised the interpretability of our study. While we observed a high level of global assessment of coordination, the estimated intervention effect was smaller than anticipated, with no significant difference in perceived coordination between control and intervention groups. Future studies should explore strategies like patient incentives to increase response rate and improve the evaluation of this innovative health care model. Trial Registration: ClinicalTrials.gov NCT02716168; https://clinicaltrials.gov/study/NCT02716168 International Registered Report Identifier (IRRID): RR2-10.1186/s12875-019-0978-8 %R 10.2196/60158 %U https://cancer.jmir.org/2025/1/e60158 %U https://doi.org/10.2196/60158 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e60948 %T Perceptions in 3.6 Million Web-Based Posts of Online Communities on the Use of Cancer Immunotherapy: Data Mining Using BERTopic %A Wu,Xingyue %A Lam,Chun Sing %A Hui,Ka Ho %A Loong,Herbert Ho-fung %A Zhou,Keary Rui %A Ngan,Chun-Kit %A Cheung,Yin Ting %+ School of Pharmacy, Faculty of Medicine, The Chinese University of Hong Kong, 8th Floor, Lo Kwee-Seong Integrated Biomedical Sciences Building, Area 39, Shatin, N.T., Hong Kong SAR, China, 852 3943 6833, yinting.cheung@cuhk.edu.hk %K social media %K cancer %K immunotherapy %K perceptions %K data mining %K oncology %K web-based %K lifestyle %K therapeutic intervention %K leukemia %K lymphoma %K survival %K treatment %K health information %K decision-making %K online community %K machine learning %D 2025 %7 10.2.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Immunotherapy has become a game changer in cancer treatment. The internet has been used by patients as a platform to share personal experiences and seek medical guidance. Despite the increased utilization of immunotherapy in clinical practice, few studies have investigated the perceptions about its use by analyzing social media data. Objective: This study aims to use BERTopic (a topic modeling technique that is an extension of the Bidirectional Encoder Representation from Transformers machine learning model) to explore the perceptions of online cancer communities regarding immunotherapy. Methods: A total of 4.9 million posts were extracted from Facebook, Twitter, Reddit, and 16 online cancer-related forums. The textual data were preprocessed by natural language processing. BERTopic modeling was performed to identify topics from the posts. The effectiveness of isolating topics from the posts was evaluated using 3 metrics: topic diversity, coherence, and quality. Sentiment analysis was performed to determine the polarity of each topic and categorize them as positive or negative. Based on the topics generated through topic modeling, thematic analysis was conducted to identify themes associated with immunotherapy. Results: After data cleaning, 3.6 million posts remained for modeling. The highest overall topic quality achieved by BERTopic was 70.47% (topic diversity: 87.86%; topic coherence: 80.21%). BERTopic generated 14 topics related to the perceptions of immunotherapy. The sentiment score of around 0.3 across the 14 topics suggested generally positive sentiments toward immunotherapy within the online communities. Six themes were identified, primarily covering (1) hopeful prospects offered by immunotherapy, (2) perceived effectiveness of immunotherapy, (3) complementary therapies or self-treatments, (4) financial and mental impact of undergoing immunotherapy, (5) impact on lifestyle and time schedules, and (6) side effects due to treatment. Conclusions: This study provides an overview of the multifaceted considerations essential for the application of immunotherapy as a therapeutic intervention. The topics and themes identified can serve as supporting information to facilitate physician-patient communication and the decision-making process. Furthermore, this study also demonstrates the effectiveness of BERTopic in analyzing large amounts of data to identify perceptions underlying social media and online communities. %M 39928933 %R 10.2196/60948 %U https://www.jmir.org/2025/1/e60948 %U https://doi.org/10.2196/60948 %U http://www.ncbi.nlm.nih.gov/pubmed/39928933 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 14 %N %P e56791 %T Effectiveness of Gastric Cancer Endoscopic Screening in Intermediate-Risk Countries: Protocol for a Systematic Review and Meta-Analysis %A Mourato,Maria Beatriz %A Pratas,Nuno %A Branco Pereira,Andreia %A Taré,Filipa %A Chança,Raphael %A Fronteira,Inês %A Dinis,Rui %A Areia,Miguel %+ NOVA National School of Public Health, Public Health Research Centre, Comprehensive Health Research Center, CHRC, LA-REAL, CCAL, NOVA University Lisbon, Lisbon, Portugal, Rua do Instituto Bacteriológico, 5, Lisbon, 1150-082, Portugal, 351 351218803101, mbb.mourato@ensp.unl.pt %K gastric cancers %K endoscopic screening %K intermediate-risk countries %K neoplasia %K early detection %K diagnosis %K cancer screening %K survival %K meta-analysis %K gastrointestinal cancers %D 2025 %7 3.2.2025 %9 Protocol %J JMIR Res Protoc %G English %X Background: Gastric cancer (GC) is the fifth most prevalent neoplasm worldwide and the fourth with the highest mortality, and its geographical distribution is not homogeneous with high-risk, intermediate-risk (IR), and low-risk areas. Advanced stages at diagnosis are related to high mortality, but early detection greatly increases the chances of survival. Upper endoscopy with biopsy is the gold standard for GC diagnosis. Several studies have investigated the relevance of endoscopic screening and how to implemente it in IR countries. However, most Western societies recommend screening only in selected populations with high-risk factors for GC. No systematic reviews on GC endoscopic screening in IR countries exist. Objective: We aimed to determine the effectiveness of endoscopic GC screening in IR countries. Methods: We will include randomized and nonrandomized controlled trials, cohort studies, case-control studies, cross-sectional studies, and economic studies focusing on endoscopic screening of GC in the asymptomatic population of IR countries. The search will be conducted in MEDLINE, SCOPUS, Embase, and Web of Science. Other gray literature sources will be additionally searched. Studies published in English, Portuguese, or Spanish until September 2024 will be included. Two independent reviewers will screen the titles and abstracts of all search results. The selected studies will then be fully analyzed, and the data will be collected and coded in a database. To minimize the risk of bias, the included studies will undergo a quality analysis according to Cochrane risk of bias tools, RoB 2 of randomized trials and ROBINS-I for nonrandomized trials; Newcastle-Ottawa Quality Assessment Scale for case-control and cohort studies; and National Heart, Lung and Blood Institute study quality assessment tools for cross-sectional studies. The data collected will be cataloged in 2 categories: efficacy or effectiveness data and economic data, and separate meta-analyses will be performed for each category if appropriate. Results: This study is expected to provide results on the efficacy, effectiveness, and cost-effectiveness of endoscopic screening in an IR population. To date, 969 studies were screened for title and abstract, 75 were selected for full-text screening, and 44 were retained for data analysis. Additionally, 2 studies were selected from our manual search. Currently, the study is in the early stages of data extraction and risk of bias assessment and is expected to be published in the first quarter of 2025. Conclusions: To our knowledge, this review will be the first to provide evidence on the effectiveness of endoscopic GC screening in IR countries. In doing so, we believe we will help guide future research, inform health care decisions and assist policy makers in this area, and support future decisions to implement GC screening programs in this type of population. Trial Registration: PROSPERO CRD42024502174; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=502174 International Registered Report Identifier (IRRID): DERR1-10.2196/56791 %M 39545590 %R 10.2196/56791 %U https://www.researchprotocols.org/2025/1/e56791 %U https://doi.org/10.2196/56791 %U http://www.ncbi.nlm.nih.gov/pubmed/39545590 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 14 %N %P e63597 %T Constructing TheKeep.Ca With Thrivers of Cancer in Manitoba, Canada, in Support of Enhancing Patient Engagement: Protocol for a Pragmatic Multimethods Study %A Thiessen,Maclean %A Jewitt,Kellie %A Stromberg,Raina %A Lamontagne,Janelle Marie %A Richardson Tanguay,Genevieve %A Albo,Annette %A Thurston,Chantale %A McMillan,Diana E %+ CancerCare Manitoba, 409 Tache Ave., Winnipeg, MB, R2H 2A6, Canada, 1 204 237 2472, maclean.thiessen@umanitoba.ca %K patient engagement %K patient empowerment %K translational research %K patient recruitment %K development and research %K protocol %K Manitoba %K Canada %K cancer %K patient advisor %K website %K research platform %K thematic analysis %K semi-structured interview %K online infrastructure %D 2025 %7 29.1.2025 %9 Protocol %J JMIR Res Protoc %G English %X Background: TheKeep.Ca was built to facilitate engagement with those experiencing cancer in Manitoba, Canada. Constructed between 2020 and 2024 with a group of patient advisors, the website includes information on engagement activities including research participation, the patient advisor role, and how those experiencing cancer can access these Manitoba activities. A link allows visitors to register to be contacted about activities that match their demographics, cancer history, and activity preferences. After TheKeep.Ca was constructed, this protocol was developed to establish TheKeep.Ca as a platform for scientific research focused on optimally engaging those experiencing cancer. Objective: We asked the following questions: (1) What was the patient advisors’ experience who participated in developing TheKeep.Ca? (2) What are the baseline characteristics of website traffic and registrants at TheKeep.Ca? (3) How does registering with TheKeep.Ca impact the cancer experience? Methods: The planned launch date for the website and initiation of research activities is January 2025. For objective 1, the active patient advisors (N=6) participating in the website project will be invited to participate in project activities including with responses to a question prompt sheet, semistructured audio-recorded interviews, or both. Responses and interviews will be analyzed using reflexive thematic analysis to understand and inform practices for patient engagement on projects. At the website launch, TheKeep.Ca will become publicly accessible and indexable on internet search engines, but no additional promotional interventions will take place in the initial 6 months resulting in visitors primarily from web search traffic. For objective 2, Google Analytics and website registrant data collected during the first six months will be analyzed to obtain baseline characteristics of website visitors. For objective 3, an online survey will be emailed to registrants six months after the website launch characterizing their website experience, the activities they participated in, and collecting feedback on the website. For objectives 2 and 3, quantitative data will be analyzed using both descriptive and inferential statistics, and qualitative data from open-ended questions will be analyzed using thematic analysis guided by an inductive descriptive semantic approach. Results: This study was approved by the University of Manitoba Health Research Ethics Board on December 12, 2024 (HS26614-H2024L263). Institutional approval from CancerCare Manitoba is pending as of December 23, 2024. Findings from objective 1 are expected to be finalized within the first six months after the website launch. Those from objectives 2 and 3 are expected by the 12-month mark. Reporting will include peer-reviewed journals, conferences, and a lay-language summary on TheKeep.Ca. Conclusions: The research outlined in this protocol will facilitate understanding patient advisors’ experience in developing TheKeep.Ca. It will also characterize the website’ effectiveness and its impact on the cancer experience, providing a baseline and direction for future research and development. International Registered Report Identifier (IRRID): PRR1-10.2196/63597 %M 39879620 %R 10.2196/63597 %U https://www.researchprotocols.org/2025/1/e63597 %U https://doi.org/10.2196/63597 %U http://www.ncbi.nlm.nih.gov/pubmed/39879620 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 11 %N %P e56625 %T Patient Voices: Multimethod Study on the Feasibility of Implementing Electronic Patient-Reported Outcome Measures in a Comprehensive Cancer Center %A Brunelli,Cinzia %A Alfieri,Sara %A Zito,Emanuela %A Spelta,Marco %A Arba,Laura %A Lombi,Linda %A Caselli,Luana %A Caraceni,Augusto %A Borreani,Claudia %A Roli,Anna %A Miceli,Rosalba %A Tine',Gabriele %A Zecca,Ernesto %A Platania,Marco %A Procopio,Giuseppe %A Nicolai,Nicola %A Battaglia,Luigi %A Lozza,Laura %A Shkodra,Morena %A Massa,Giacomo %A Loiacono,Daniele %A Apolone,Giovanni %+ Clinical Psychology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, Via Venezian, 1, Milano, 20133, Italy, 39 0223903179, sara.alfieri@istitutotumori.mi.it %K feasibility %K oncology %K patient-reported outcomes %K PROMs %K quality of life %K mixed methods study %K cancer %K electronic patient-reported outcomes %K patient compliance %K barrier %K implementation %K usability scale %K semistructured interview %K questionnaire %K clinical management %K eHealth %D 2025 %7 22.1.2025 %9 Original Paper %J JMIR Cancer %G English %X Background: “Patient Voices” is a software developed to promote the systematic collection of electronic patient-reported outcome measures (ePROMs) in routine oncology clinical practice. Objective: This study aimed to assess compliance with and feasibility of the Patient Voices ePROM system and analyze patient-related barriers in an Italian comprehensive cancer center. Methods: Consecutive patients with cancer attending 3 outpatient clinics and 3 inpatient wards were screened for eligibility (adults, native speakers, and being able to fill in the ePROMs) and enrolled in a quantitative and qualitative multimethod study. Compliance, reasons for not administering the ePROMs, patients’ interaction needs, and patient-perceived System Usability Scale (range 0-100) were collected; semistructured interviews were carried out in a subsample of patients. Results: From June 2020 to September 2021, a total of 435 patients were screened, 421 (96.7%) were eligible, and 309 completed the ePROMs (309/421, 73.4%; 95% CI 69.8%-77.5%; mean age 63.3, SD 13.7 years). Organization problems and patient refusal were the main reasons for not administering the ePROMs (outpatients: 40/234, 17.1% and inpatients: 44/201, 21.9%). Help for tablet use was needed by 27.8% (47/169) of outpatients and 10.7% (15/140) of inpatients, while the support received for item interpretation was similar in the 2 groups (outpatients: 36/169, 21.3% and inpatients: 26/140, 18.6%). Average System Usability Scale scores indicated high usability in both groups (outpatients: mean 86.8, SD 15.8 and inpatients: mean 83.9, SD 18.8). Overall, repeated measurement compliance was 76.9% (173/225; outpatients only). Interviewed patients showed positive attitudes toward ePROMs. However, there are barriers to implementation related to the time and cognitive effort required to complete the questionnaires. There is also skepticism about the usefulness of ePROMs in interactions with health care professionals. Conclusions: This study provides useful information for future ePROM implementation strategies, aimed at effectively supporting the routine clinical management and care of patients with cancer. In addition, these findings may be relevant to other organizations willing to systematically collect PROMs or ePROMs in their clinical routines. Trial Registration: ClinicalTrials.gov NCT03968718; https://clinicaltrials.gov/study/NCT03968718 %M 39842002 %R 10.2196/56625 %U https://cancer.jmir.org/2025/1/e56625 %U https://doi.org/10.2196/56625 %U http://www.ncbi.nlm.nih.gov/pubmed/39842002 %0 Journal Article %@ 2564-1891 %I JMIR Publications %V 5 %N %P e59625 %T How Patients With Cancer Use the Internet to Search for Health Information: Scenario-Based Think-Aloud Study %A Huijgens,Fiorella %A Kwakman,Pascale %A Hillen,Marij %A van Weert,Julia %A Jaspers,Monique %A Smets,Ellen %A Linn,Annemiek %+ Department of Medical Psychology, Amsterdam University Medical Centers, location Academic Medical Center, University of Amsterdam, Meibergdreef 9, Amsterdam, 1105 AZ, Netherlands, 31 623715595, f.l.huijgens@amsterdamumc.nl %K web-based health information seeking %K think aloud %K scenario based %K cancer %K patient evaluation %K information seeking %K web-based information %K health information %K internet %K pattern %K motivation %K cognitive %K emotional %K response %K patient %K survivor %K caregiver %K interview %K scenario %K women %K men %D 2025 %7 16.1.2025 %9 Original Paper %J JMIR Infodemiology %G English %X Background: Patients with cancer increasingly use the internet to seek health information. However, thus far, research treats web-based health information seeking (WHIS) behavior in a rather dichotomous manner (ie, approaching or avoiding) and fails to capture the dynamic nature and evolving motivations that patients experience when engaging in WHIS throughout their disease trajectory. Insights can be used to support effective patient-provider communication about WHIS and can lead to better designed web-based health platforms. Objective: This study explored patterns of motivations and emotions behind the web-based information seeking of patients with cancer at various stages of their disease trajectory, as well as the cognitive and emotional responses evoked by WHIS via a scenario-based, think-aloud approach. Methods: In total, 15 analog patients were recruited, representing patients with cancer, survivors, and informal caregivers. Imagining themselves in 3 scenarios—prediagnosis phase (5/15, 33%), treatment phase (5/15, 33%), and survivor phase (5/15, 33%)—patients were asked to search for web-based health information while being prompted to verbalize their thoughts. In total, 2 researchers independently coded the sessions, categorizing the codes into broader themes to comprehend analog patients’ experiences during WHIS. Results: Overarching motives for WHIS included reducing uncertainty, seeking reassurance, and gaining empowerment. At the beginning of the disease trajectory, patients mainly showed cognitive needs, whereas this shifted more toward affective needs in the subsequent disease stages. Analog patients’ WHIS approaches varied from exploratory to focused or a combination of both. They adapted their search strategy when faced with challenging cognitive or emotional content. WHIS triggered diverse emotions, fluctuating throughout the search. Complex, confrontational, and unexpected information mainly induced negative emotions. Conclusions: This study provides valuable insights into the motivations of patients with cancer underlying WHIS and the emotions experienced at various stages of the disease trajectory. Understanding patients’ search patterns is pivotal in optimizing web-based health platforms to cater to specific needs. In addition, these findings can guide clinicians in accommodating patients’ specific needs and directing patients toward reliable sources of web-based health information. %M 39819829 %R 10.2196/59625 %U https://infodemiology.jmir.org/2025/1/e59625 %U https://doi.org/10.2196/59625 %U http://www.ncbi.nlm.nih.gov/pubmed/39819829 %0 Journal Article %@ 2373-6658 %I JMIR Publications %V 8 %N %P e63006 %T Ethical Dilemmas Among Oncology Nurses in China: Cross-Sectional Study %A Ko,Eunjeong %A Shamsalizadeh,Neda %A Lee,Jaehoon %A Ni,Ping %K prognosis-related communication %K ethical dilemmas %K oncology %K ethics %K China %K beliefs %K nursing %K cultural values %K prognosis %D 2024 %7 13.12.2024 %9 %J Asian Pac Isl Nurs J %G English %X Background: Effective communication about cancer prognosis is imperative for enhancing the quality of end-of-life care and improving patient well-being. This practice is sensitive and is heavily influenced by cultural values, beliefs, and norms, which can lead to ethical dilemmas. Despite their significance, ethical challenges in nursing related to prognosis communication are understudied in China. Objective: This study aimed to examine the ethical dilemmas relating to cancer prognosis communication and their associated factors. Methods: A cross-sectional design was employed to survey 373 oncology nurses in mainland China. Data were collected on ethical dilemmas, attitudes, barriers, experiences with prognosis communication, sociodemographics, and practice-related information. Ordinary least squares regressions were used to identify factors contributing to ethical dilemmas. Results: Participants reported a moderate level of ethical dilemmas in prognostic communication (mean 13.5, SD 3.42; range 5‐20). Significant predictors of these dilemmas included perceived barriers (P<.001), experiences with prognosis communication (P<.001), and years of work experience (P=.002). Nurses who perceived greater communication barriers, had more negative experiences with prognosis communication, and had less work experience were more likely to encounter ethical dilemmas in prognosis-related communication. Conclusions: Chinese oncology nurses frequently encounter ethical dilemmas, as well as barriers, in communicating cancer prognoses. This study’s findings emphasize the importance of culturally tailored communication training. Collaborative interprofessional training, particularly through physician-nurse partnerships, can perhaps enhance the proficiency of cancer prognosis-related communication. %R 10.2196/63006 %U https://apinj.jmir.org/2024/1/e63006 %U https://doi.org/10.2196/63006 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e52542 %T Factors Associated With Digital Intervention Engagement and Adherence in Patients With Cancer: Systematic Review %A Montalescot,Lucile %A Baussard,Louise %A Charbonnier,Elodie %+ Laboratoire de Psychopathologie et Processus de Santé, Université Paris-Cité, 71 avenue Edouard Vaillant, Boulogne-Billancourt, 92100, France, 33 1 76 53 29 81, lucile.montalescot@u-paris.fr %K adherence %K engagement %K eHealth %K mHealth %K cancer %K mobile health %K app %K eHealth interventions %K patient %K cancer care %K digital health %K health-related %K intervention-related %K sociodemographic %K behavior %K systematic review %D 2024 %7 11.12.2024 %9 Review %J J Med Internet Res %G English %X Background: Digital interventions offer vital support for patients with cancer through education, behavior change, and monitoring. Despite their potential, patient adherence to and engagement with these self-help interventions is challenging. Factors like user characteristics, technology, and intervention design influence adherence and engagement. Existing reviews have gaps in exploring diverse factors associated with adherence in cancer care. Objective: This systematic review aims to identify factors influencing adherence to and engagement with digital interventions with self-help components in cancer care. It examined sociodemographic, psychosocial, health-related, and intervention-related factors that affect patients’ adherence to and engagement with these digital health solutions. Methods: Following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines, a search was conducted across PubMed, Embase, Cochrane Library, and PsycINFO to find studies published from January 2010 to September 2021. The studies included in this review focused on adult patients with cancer using digital interventions with self-help features. Data were extracted and synthesized using a standardized approach. Factors associated with adherence were synthesized according to their type—sociodemographic factors, psychosocial factors, health-related factors, technology-related factors, and intervention-related factors. Results: Among 9386 studies initially screened, 61 (0.6%) were eligible for analysis. These studies covered diverse eHealth intervention types, cancer types, and outcome measures. Investigating the determinants of adherence to and engagement with digital interventions was the main objective for 43% (26/61) of the included studies. Adherence and engagement were gauged using varied measures, such as dropout rates, log-ins, and self-reported measures. Results regarding factors associated with adherence and engagement were inconsistent across studies. Most sociodemographic (eg, age) and health-related factors (eg, cancer stage) yielded mixed outcomes. However, comorbidity consistently predicted lower adherence and engagement. Results regarding psychosocial factors were more stable across studies. Specifically, higher social support was associated with lower adherence and engagement. Finally, intervention-related factors like intervention type or human support showed conflicting results. Adopting an intersectional perspective revealed that specificities vary according to intervention goals and the operationalization of adherence versus engagement, with women being more adherent and engaged than men in interventions targeting distress. When focusing on adherence rather than engagement, older patients were more adherent than younger patients. Conclusions: This review highlights the complexity of adherence to and engagement with digital interventions in cancer care. While some factors, notably comorbidities and low social support, were consistently linked to adherence and engagement, others displayed mixed associations. The review underscores the need for standardizing measures, investigating specific intervention features, and enhancing study quality to optimize digital interventions for patients with cancer. Further research is crucial to better understand and improve adherence to digital health solutions in cancer care. Trial Registration: PROSPERO CRD42021281028; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=281028 %R 10.2196/52542 %U https://www.jmir.org/2024/1/e52542 %U https://doi.org/10.2196/52542 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e49089 %T Examining the Effectiveness of Electronic Patient-Reported Outcomes in People With Cancer: Systematic Review and Meta-Analysis %A Perry,Melissa Betty %A Taylor,Sally %A Khatoon,Binish %A Vercell,Amy %A Faivre-Finn,Corinne %A Velikova,Galina %A Marsden,Antonia %A Heal,Calvin %A Yorke,Janelle %+ School of Nursing, The Hong Kong Polytechnic University, Room GH507a, 11 Yuk Choi Rd, Hung Hom, Kowloon, 852, China (Hong Kong), 852 92570178, janelle.yorke@polyu.edu.hk %K telemedicine %K patient-reported outcome measure %K neoplasms %K quality of life %K systematic review %K meta-analysis %K randomized controlled trial %D 2024 %7 31.7.2024 %9 Review %J J Med Internet Res %G English %X Background: Electronic patient-reported outcomes (ePROs) are commonly used in oncology clinical practice and have shown benefits for patients and health resource use. Objective: The aim of this study was to compare the isolated effect of administering ePROs to patients with cancer versus a control condition. Methods: The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines were followed. Randomized controlled trials evaluating ePRO interventions that aimed to improve health-related outcomes among patients with cancer were included. The primary outcome was health-related quality of life (HRQOL), and the secondary outcomes were symptoms, hospital admissions, unplanned visits, chemotherapy completion, survival, and satisfaction with care. The effect sizes of ePROs on health-related outcomes were analyzed as standardized mean differences (SMDs) with 95% CIs using a random effects model. Results: The search identified 10,965 papers, of which 19 (0.17%) from 15 studies were included. The meta-analysis showed an improvement in HRQOL at 3 months, measured by the Functional Assessment of Cancer Therapy–General (SMD 0.29, 95% CI 0.19 to 0.39), and at 6 months, assessed using various HRQOL measures (SMD 0.21, 95% CI 0.11 to 0.30). Of the 15 studies, 9 (60%) reported a positive signal on HRQOL, with two-thirds of the studies (n=6, 67%) including tailored patient advice and two-thirds (n=6, 67%) using clinician alert systems. Conclusions: The meta-analysis showed an improvement in HRQOL at 6 months and in Functional Assessment of Cancer Therapy–General scores at 3 months for studies that included tailored advice and clinician alerts, suggesting that these elements may improve ePRO effectiveness. The findings will provide guidance for future use and help health care professionals choose the most suitable ePRO features for their patients. Trial Registration: PROSPERO CRD42020175007; https://tinyurl.com/5cwmy3j6 %R 10.2196/49089 %U https://www.jmir.org/2024/1/e49089 %U https://doi.org/10.2196/49089 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 10 %N %P e52061 %T Pediatric Cancer Communication on Twitter: Natural Language Processing and Qualitative Content Analysis %A Lau,Nancy %A Zhao,Xin %A O'Daffer,Alison %A Weissman,Hannah %A Barton,Krysta %+ Center for Child Health, Behavior and Development, Seattle Children’s Research Institute, 1920 Terry Avenue, Seattle, WA, 98101, United States, 1 2068840569, nancy.lau@seattlechildrens.org %K cancer %K COVID-19 %K Twitter %K communication %K child health %K caregivers %K social media %K tweet %K tweets %K sentiment %K oncology %K cancers %K pediatric %K pediatrics %K child %K children’ youth %K experience %K experiences %K attitude %K attitudes %K opinion %K opinions %K perception %K perceptions %K perspective %K perspectives %D 2024 %7 7.5.2024 %9 Original Paper %J JMIR Cancer %G English %X Background: During the COVID-19 pandemic, Twitter (recently rebranded as “X”) was the most widely used social media platform with over 2 million cancer-related tweets. The increasing use of social media among patients and family members, providers, and organizations has allowed for novel methods of studying cancer communication. Objective: This study aimed to examine pediatric cancer–related tweets to capture the experiences of patients and survivors of cancer, their caregivers, medical providers, and other stakeholders. We assessed the public sentiment and content of tweets related to pediatric cancer over a time period representative of the COVID-19 pandemic. Methods: All English-language tweets related to pediatric cancer posted from December 11, 2019, to May 7, 2022, globally, were obtained using the Twitter application programming interface. Sentiment analyses were computed based on Bing, AFINN, and NRC lexicons. We conducted a supplemental nonlexicon-based sentiment analysis with ChatGPT (version 3.0) to validate our findings with a random subset of 150 tweets. We conducted a qualitative content analysis to manually code the content of a random subset of 800 tweets. Results: A total of 161,135 unique tweets related to pediatric cancer were identified. Sentiment analyses showed that there were more positive words than negative words. Via the Bing lexicon, the most common positive words were support, love, amazing, heaven, and happy, and the most common negative words were grief, risk, hard, abuse, and miss. Via the NRC lexicon, most tweets were categorized under sentiment types of positive, trust, and joy. Overall positive sentiment was consistent across lexicons and confirmed with supplemental ChatGPT (version 3.0) analysis. Percent agreement between raters for qualitative coding was 91%, and the top 10 codes were awareness, personal experiences, research, caregiver experiences, patient experiences, policy and the law, treatment, end of life, pharmaceuticals and drugs, and survivorship. Qualitative content analysis showed that Twitter users commonly used the social media platform to promote public awareness of pediatric cancer and to share personal experiences with pediatric cancer from the perspective of patients or survivors and their caregivers. Twitter was frequently used for health knowledge dissemination of research findings and federal policies that support treatment and affordable medical care. Conclusions: Twitter may serve as an effective means for researchers to examine pediatric cancer communication and public sentiment around the globe. Despite the public mental health crisis during the COVID-19 pandemic, overall sentiments of pediatric cancer–related tweets were positive. Content of pediatric cancer tweets focused on health and treatment information, social support, and raising awareness of pediatric cancer. %M 38713506 %R 10.2196/52061 %U https://cancer.jmir.org/2024/1/e52061 %U https://doi.org/10.2196/52061 %U http://www.ncbi.nlm.nih.gov/pubmed/38713506 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 11 %N %P e53053 %T Validating the Effectiveness of the Patient-Centered Cancer Care Framework by Assessing the Impact of Work System Factors on Patient-Centered Care and Quality of Care: Interview Study With Newly Diagnosed Cancer Patients %A Elkefi,Safa %A Asan,Onur %+ School of Systems and Enterprises, Stevens Institute of Technology, 1 Castle Point Terrace, Hoboken, NJ, 07030, United States, 1 4145264330, oasan@stevens.edu %K cancer %K communication %K trust %K satisfaction %K technology %K workload %K work system factors %D 2024 %7 24.4.2024 %9 Original Paper %J JMIR Hum Factors %G English %X Background: Patients with cancer who have recently been diagnosed have distinct requirements compared to cancer survivors. It is crucial to take into account their unique needs to ensure that they make informed decisions and are receptive to the care provided. Objective: This study suggested a framework titled Effectiveness of Patient-Centered Cancer Care that considers the needs of newly diagnosed patients with cancer and related work system factors. This study investigated how work system factors influence the perceptions of patient-centered care, quality of care, and associated outcomes among newly diagnosed patients with cancer. Patient-centered care is defined in terms of workload and communication considerations, whereas the quality of care is assessed through indicators such as trust in physicians, satisfaction with care, and perceptions of technology. Methods: This study used qualitative data collected through interviews with newly diagnosed patients with cancer (N=20) right after their first visits with their physicians. Thematic analysis was conducted to validate the 5 hypotheses of the framework, mapping the interactions among quality of care, patient-centered care, and work system factors. Results: We found that workload and patient-centered communication impact the quality of care and that the work system elements impact the patient-centeredness (workload and communication) and the quality of care (trust in physicians, satisfaction with care, and perception of technology use). Conclusions: Qualitatively validating the proposed Effectiveness of Patient-Centered Cancer Care framework, this study demonstrated its efficacy in elucidating the interplay of various factors. The framework holds promise for informing interventions geared toward enhancing patients’ experiences during their initial visits after diagnosis. There is a pressing need for heightened attention to the organizational design, patient processes, and collaborative efforts among diverse stakeholders and providers to optimize the overall patient experience. %M 38656776 %R 10.2196/53053 %U https://humanfactors.jmir.org/2024/1/e53053 %U https://doi.org/10.2196/53053 %U http://www.ncbi.nlm.nih.gov/pubmed/38656776 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 13 %N %P e50032 %T Supportive Care Needs in Chinese, Vietnamese, and Korean Americans With Metastatic Cancer: Mixed Methods Protocol for the DAWN Study %A Kim,Jacqueline H J %A Kagawa Singer,Marjorie %A Bang,Lisa %A Ko,Amy %A Nguyen,Becky %A Chen Stokes,Sandy %A Lu,Qian %A Stanton,Annette L %+ Department of Medicine, University of California, Irvine, 100 Theory, Suite 100, Irvine, CA, 92617, United States, 1 9498249216, jhjkim@hs.uci.edu %K Asian American %K disparities %K metastatic cancer %K psychosocial %K supportive care %K unmet needs %K well-being %D 2024 %7 22.4.2024 %9 Protocol %J JMIR Res Protoc %G English %X Background: Asian Americans with metastatic cancer are an understudied population. The Describing Asian American Well-Being and Needs in Cancer (DAWN) Study was designed to understand the supportive care needs of Chinese-, Vietnamese-, and Korean-descent (CVK) patients with metastatic cancer. Objective: This study aims to present the DAWN Study protocol involving a primarily qualitative, convergent, mixed methods study from multiple perspectives (patients or survivors, caregivers, and health care professionals). Methods: CVK Americans diagnosed with solid-tumor metastatic cancer and their caregivers were recruited nationwide through various means (registries, community outreach newsletters, newspapers, radio advertisements, etc). Potentially eligible individuals were screened and consented on the web or through a phone interview. The study survey and interview for patients or survivors and caregivers were provided in English, traditional/simplified Chinese and Cantonese/Mandarin, Vietnamese, and Korean, and examined factors related to facing metastatic cancer, including quality of life, cultural values, coping, and cancer-related symptoms. Community-based organizations assisted in recruiting participants, developing and translating study materials, and connecting the team to individuals for conducting interviews in Asian languages. Health care professionals who have experience working with CVK patients or survivors with metastatic solid cancer were recruited through referrals from the DAWN Study community advisory board and were interviewed to understand unmet supportive care needs. Results: Recruitment began in November 2020; data collection was completed in October 2022. A total of 66 patients or survivors, 13 caregivers, and 15 health care professionals completed all portions of the study. We completed data management in December 2023 and will submit results for patients or survivors and caregivers to publication outlets in 2024. Conclusions: Future findings related to this protocol will describe and understand the supportive care needs of CVK patients or survivors with metastatic cancer and will help develop culturally appropriate psychosocial interventions that target known predictors of unmet supportive care needs in Chinese, Vietnamese, and Korean Americans with metastatic cancer. International Registered Report Identifier (IRRID): DERR1-10.2196/50032 %M 38648633 %R 10.2196/50032 %U https://www.researchprotocols.org/2024/1/e50032 %U https://doi.org/10.2196/50032 %U http://www.ncbi.nlm.nih.gov/pubmed/38648633 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e49574 %T Development and Implementation of an eHealth Oncohematonootric Program: Descriptive, Observational, Prospective Cohort Pilot Study %A Sánchez-Quiñones,Beatriz %A Antón-Maldonado,Cristina %A Ibarra Vega,Nataly %A Martorell Mariné,Isabel %A Santamaria,Amparo %+ Hybrid Hematology Department, University Hospital Vinalopó, Calle Tonico Sansano Mora, 14, Alicante, Elche, 03293, Spain, 34 658981769, masantamaria@vinaloposalud.com %K Nootric app %K oncohematology patient %K physical-nutritional well-being %K multidisciplinary team %D 2024 %7 8.4.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: In oncohematology, both the development of the disease and the side effects of antineoplastic treatment often take a toll on patients’ physical and nutritional well-being. In this era of digital transformation, we launched a pioneering project for oncohematologic patients to promote adherence to a healthy lifestyle and improve their physical and nutritional well-being. We aim to achieve this goal by involving doctors and nutritionists through the Nootric app. Objective: This study aims to assess the impact of the use of eHealth tools to facilitate nutrition and well-being in oncohematologic patients. We also aim to determine the usefulness of physical-nutritional management in improving tolerance to chemotherapy treatments within routine clinical practice. Methods: We designed a descriptive, observational, longitudinal, prospective cohort pilot study that included a total of 22 patients from March to May 2022 in the Vinalopó University Hospital. The inclusion criteria were adults over 18 years of age diagnosed with oncohematological pathology in active chemotherapy treatment. An action plan was created to generate alerts between the doctor and the nutritionist. In the beginning, the patients were trained to use the app and received education highlighting the importance of nutrition and physical exercise. Sociodemographic, clinical-biological-analytical (eg, malnutrition index), health care impact, usability, and patient adherence data were collected. Tolerance to chemotherapy treatment and its health care impact were evaluated. Results: We included 22 patients, 11 (50%) female and 11 (50%) male, ranging between 42 and 84 years of age. Among them, 13 (59%) were adherents to the program. The most frequent diseases were lymphoproliferative syndromes (13/22, 59%) and multiple myeloma (4/22, 18%). Moreover, 15 (68%) out of 22 patients received immunochemotherapy, while 7 (32%) out of 22 patients received biological treatment. No worsening of clinical-biological parameters was observed. Excluding dropouts and abandonments (n=9/22, 41%), the adherence rate was 81%, established by calculating the arithmetic mean of the adherence rates of 13 patients. No admission was observed due to gastrointestinal toxicity or discontinuation of treatment related to alterations in physical and nutritional well-being. In addition, only 5.5% of unscheduled consultations were increased due to incidents in well-being, mostly telematic (n=6/103 consultation are unscheduled). Additionally, 92% of patients reported an improvement in their nutritional habits (n=12/13), and up to 45% required adjustment of medical supportive treatment (n=5/11). There were no cases of grade 3 or greater gastrointestinal toxicity. All of this reflects improved tolerance to treatments. Patients reported a satisfaction score of 4.3 out of 5, while professionals rated their satisfaction at 4.8 out of 5. Conclusions: We demonstrated the usefulness of integrating new technologies through a multidisciplinary approach. The Nootric app facilitated collaboration among the medical team, nutritionists, and patients. It enabled us to detect health issues related to physical-nutritional well-being, anticipate major complications, and mitigate potentially avoidable risks. Consequently, there was a decrease in unscheduled visits and admissions related to this condition. %M 38588522 %R 10.2196/49574 %U https://formative.jmir.org/2024/1/e49574 %U https://doi.org/10.2196/49574 %U http://www.ncbi.nlm.nih.gov/pubmed/38588522 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e47685 %T The Acceptance and Use of Digital Technologies for Self-Reporting Medication Safety Events After Care Transitions to Home in Patients With Cancer: Survey Study %A Jiang,Yun %A Hwang,Misun %A Cho,Youmin %A Friese,Christopher R %A Hawley,Sarah T %A Manojlovich,Milisa %A Krauss,John C %A Gong,Yang %+ School of Nursing, University of Michigan, 400 North Ingalls Street, Ann Arbor, MI, 48109, United States, 1 734 763 3705, jiangyu@umich.edu %K digital technology %K patient safety %K patient participation %K patient-reported outcomes %K drug-related side effects and adverse reactions %D 2024 %7 8.3.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Actively engaging patients with cancer and their families in monitoring and reporting medication safety events during care transitions is indispensable for achieving optimal patient safety outcomes. However, existing patient self-reporting systems often cannot address patients’ various experiences and concerns regarding medication safety over time. In addition, these systems are usually not designed for patients’ just-in-time reporting. There is a significant knowledge gap in understanding the nature, scope, and causes of medication safety events after patients’ transition back home because of a lack of patient engagement in self-monitoring and reporting of safety events. The challenges for patients with cancer in adopting digital technologies and engaging in self-reporting medication safety events during transitions of care have not been fully understood. Objective: We aim to assess oncology patients’ perceptions of medication and communication safety during care transitions and their willingness to use digital technologies for self-reporting medication safety events and to identify factors associated with their technology acceptance. Methods: A cross-sectional survey study was conducted with adult patients with breast, prostate, lung, or colorectal cancer (N=204) who had experienced care transitions from hospitals or clinics to home in the past 1 year. Surveys were conducted via phone, the internet, or email between December 2021 and August 2022. Participants’ perceptions of medication and communication safety and perceived usefulness, ease of use, attitude toward use, and intention to use a technology system to report their medication safety events from home were assessed as outcomes. Potential personal, clinical, and psychosocial factors were analyzed for their associations with participants’ technology acceptance through bivariate correlation analyses and multiple logistic regressions. Results: Participants reported strong perceptions of medication and communication safety, positively correlated with medication self-management ability and patient activation. Although most participants perceived a medication safety self-reporting system as useful (158/204, 77.5%) and easy to use (157/204, 77%), had a positive attitude toward use (162/204, 79.4%), and were willing to use such a system (129/204, 63.2%), their technology acceptance was associated with their activation levels (odds ratio [OR] 1.83, 95% CI 1.12-2.98), their perceptions of communication safety (OR 1.64, 95% CI 1.08-2.47), and whether they could receive feedback after self-reporting (OR 3.27, 95% CI 1.37-7.78). Conclusions: In general, oncology patients were willing to use digital technologies to report their medication events after care transitions back home because of their high concerns regarding medication safety. As informed and activated patients are more likely to have the knowledge and capability to initiate and engage in self-reporting, developing a patient-centered reporting system to empower patients and their families and facilitate safety health communications will help oncology patients in addressing their medication safety concerns, meeting their care needs, and holding promise to improve the quality of cancer care. %M 38457204 %R 10.2196/47685 %U https://www.jmir.org/2024/1/e47685 %U https://doi.org/10.2196/47685 %U http://www.ncbi.nlm.nih.gov/pubmed/38457204 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 10 %N %P e53956 %T Need for Culturally Competent and Responsive Cancer Education for African Immigrant Families and Youth Living in the United States %A Abraham,Olufunmilola %A Agoke,Adeola %A Sanuth,Kazeem %A Fapohunda,Abimbola %A Ogunsanya,Motolani %A Piper,Megan %A Trentham-Dietz,Amy %+ Social and Administrative Sciences Division, School of Pharmacy, University of Wisconsin-Madison, Room 2515 Rennebohm Hall, 777 Highland Avenue, Madison, WI, 53705, United States, 1 6082634498, olufunmilola.abraham@wisc.edu %K African immigrant %K youth %K adolescent %K adolescents %K teen %K teens %K teenager %K teenagers %K cancer awareness %K health disparities %K culturally competent education %K African %K Black %K immigrant %K cultural %K culturally %K cancer %K oncology %K patient education %K awareness %K prevention %K disparity %K disparities %D 2024 %7 6.3.2024 %9 Viewpoint %J JMIR Cancer %G English %X Cancer prevalence data for Black Americans is monolithic and fails to consider the diverse cultures and backgrounds within that community. For instance, African immigrants constitute a meaningful proportion of the foreign-born Black immigrants in the United States (42%), but the prevalence of cancer in the African immigrant community itself is unknown. Therefore, without accurate cancer prevalence data, it is impossible to identify trends and other key factors that are needed to support the health of African immigrants and their children. Moreover, it is impossible to understand how the culture and language of subgroups influence their cancer-related health behavior. While research in this area is limited, the existing literature articulates the need for culturally responsive and culturally tailored cancer education for African immigrants and their adolescent children, which is what we advocate for in this viewpoint paper. Existing projects demonstrate the feasibility of culturally responsive programming for adults; however, few projects include or focus on adolescents or children born to African immigrants. To best meet the needs of this understudied community, researchers must use culturally competent interventions alongside familiar, usable media. For adolescents, technology is ubiquitous thus, the creation of a culturally tailored digital intervention has immense potential to improve cancer awareness and prevention for youth and their community. More research is needed to address many of the existing research gaps and develop a rich understanding of the unique experience of cancer among African immigrant families that can be used to inform intervention development. Through this viewpoint, we review the current state of cancer-related research among African immigrant families in the United States. In this paper, we acknowledge the current knowledge gaps and issues surrounding measurement and then discuss the factors relevant to designing an educational intervention targeted at African immigrants and the role of African immigrant youth. %M 38447129 %R 10.2196/53956 %U https://cancer.jmir.org/2024/1/e53956 %U https://doi.org/10.2196/53956 %U http://www.ncbi.nlm.nih.gov/pubmed/38447129 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e48296 %T Involving Patients and Clinicians in the Design of Wireframes for Cancer Medicines Electronic Patient Reported Outcome Measures in Clinical Care: Mixed Methods Study %A Dunlop,Emma %A Ferguson,Aimee %A Mueller,Tanja %A Baillie,Kelly %A Laskey,Jennifer %A Clarke,Julie %A Kurdi,Amanj %A Wales,Ann %A Connolly,Thomas %A Bennie,Marion %+ Strathclyde Institute of Pharmacy & Biomedical Sciences, University of Strathclyde, 161 Cathedral St, Glasgow, G4 0RE, United Kingdom, 44 01415482478, emma.dunlop@strath.ac.uk %K cancer %K clinicians %K mHealth %K mixed methods study %K patient reported outcome measures %K patients %K technology acceptance model %D 2023 %7 21.12.2023 %9 Original Paper %J JMIR Form Res %G English %X Background: Cancer treatment is a key component of health care systems, and the increasing number of cancer medicines is expanding the treatment landscape. However, evidence of the impact on patients has been focused more on chemotherapy toxicity and symptom control and less on the effect of cancer medicines more broadly on patients’ lives. Evolving electronic patient-reported outcome measures (ePROMs) presents the opportunity to secure early engagement of patients and clinicians in shaping the collection of quality-of-life metrics and presenting these data to better support the patient-clinician decision-making process. Objective: The aim of this study was to obtain initial feedback from patients and clinicians on the wireframes of a digital solution (patient app and clinician dashboard) for the collection and use of cancer medicines ePROMs. Methods: We adopted a 2-stage, mixed methods approach. Stage 1 (March to June 2019) consisted of interviews and focus groups with cancer clinicians and patients with cancer to explore the face validity of the wireframes, informed by the technology acceptance model constructs (perceived ease of use, perceived usefulness, and behavioral intention to use). In stage 2 (October 2019 to February 2020), the revised wireframes were assessed through web-based, adapted technology acceptance model questionnaires. Qualitative data (stage 1) underwent a framework analysis, and descriptive statistics were performed on quantitative data (stage 2). Clinicians and patients with cancer were recruited from NHS Greater Glasgow & Clyde, the largest health board in Scotland. Results: A total of 14 clinicians and 19 patients participated in a combination of stage 1 interviews and focus groups. Clinicians and patients indicated that the wireframes of a patient app and clinician dashboard for the collection of cancer medicines ePROMs would be easy to use and could focus discussions, and they would be receptive to using such tools in the future. In stage 1, clinicians raised the potential impact on workload, and both groups identified the need for adequate IT skills to use each technology. Changes to the wireframes were made, and in stage 2, clinicians (n=8) and patients (n=16) indicated it was “quite likely” that the technologies would be easy to use and they would be “quite likely” to use them in the future. Notably, clinicians indicated that they would use the dashboard to enable treatment decisions “with around half” of their patients. Conclusions: This study emphasizes the importance of consulting both patients and clinicians in the design of digital solutions. The wireframes were perceived positively by patients and clinicians who were willing to use such technologies if available in the future as part of routine care. However, challenges were raised, and some differences were identified between participant groups, which warrant further research. %M 38127422 %R 10.2196/48296 %U https://formative.jmir.org/2023/1/e48296 %U https://doi.org/10.2196/48296 %U http://www.ncbi.nlm.nih.gov/pubmed/38127422 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 9 %N %P e49735 %T Development of Quality of Life in Adolescents and Young Adults With Cancer Using a Patient Support Smartphone App: Prepost Interventional Study %A Bentsen,Line %A Hanghøj,Signe %A Hjerming,Maiken %A Bergmann,Mette Buur %A Thycosen,Marianne %A Borup,Anette %A Larsen,Camilla %A Pappot,Helle %+ Department of Oncology, Copenhagen University Hospital, Rigshospitalet, Blegdamsvej 9, Copenhagen, 2100, Denmark, 45 30113524, line.bentsen.01@regionh.dk %K adolescent %K young adult %K cancer %K quality of life %K eHealth %K smartphone application %K application %K development %K interventional study %K youth %K grief %K symptom tracker %K social community %K Denmark %K physical functioning %K treatment %K mobile phone %D 2023 %7 4.12.2023 %9 Original Paper %J JMIR Cancer %G English %X Background: Adolescents and young adults often experience existential concerns in addition to side effects during a cancer trajectory, which they often carry alone. Thus, cohesion with other adolescents and young adults with cancer is essential but difficult due to the relatively small, widely dispersed nationwide population. In cocreation, a smartphone app has been developed and includes an information bank, a symptom tracker, and a social community platform, aiming to improve the quality of life (QoL) in this patient group. Objective: This nationwide, multicenter study aimed to investigate the QoL in adolescents and young adults undergoing a cancer trajectory as they used the app for 6 weeks. Methods: Via youth support initiatives, participants were recruited from hospitals in all regions of Denmark. Inclusion criteria were patients with cancer aged 15-29 years who either initiated any cancer treatment or started follow-up after cancer treatment within 30 days. Participants used the adolescents and young adults cancer app for 6 weeks. Before and after the 6 weeks of app use, they completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30). The participants were divided into a treatment and a follow-up group for analysis. A high score for a functional scale or the global health or overall QoL represents a high or healthy level of functioning or high QoL, respectively; however, a high score for a symptom scale or item represents a high level of symptomatology. Results: Overall, 81 participants were recruited. However, 4 participants did not answer the questionnaire and 6 participants did not use the app. In the treatment group (n=36), significant improvement was found in 2 domains: “Role functioning” (baseline median 33.33, IQR 16.67-83.33 vs 6 weeks median 66.67, IQR 33.33-83.33; P=.04) and “Pain” (baseline median 33.33, IQR 16.67-50.00 vs 6 weeks median 16.67, IQR 0.00-33.33; P=.04). The “Global health/Overall QoL” scale remained stable (baseline median 58.33, IQR 45.83-77.08 vs 6 weeks median 62.50, IQR 41.67-75.00; P=.25). In the follow-up group (n=35), significant improvement was found in 3 domains: “Physical functioning” (baseline median 79.23, IQR 73.33-93.33 vs 6 weeks median 82.86, IQR 73.33-100.00; P=.03), “Cognitive functioning” (baseline median 62.38, IQR 50.00-83.33 vs 6 weeks median 69.52, IQR 50.00-100.00; P=.02), and “Social functioning” (baseline median 76.19, IQR 50.00-100.00 vs 6 weeks median 85.71, IQR 83.33-100.00; P=.05), as well as in the “Global health/Overall QoL” scale (baseline median 57.14, IQR 83.33-100.00 vs 6 weeks median 75.0, IQR 62.91-85.73; P<.001). Conclusions: In this study, we found an improvement in specific QoL scales for both participants in treatment and follow-up when using the app for 6 weeks. The global health or overall QoL score improved significantly in the follow-up group. In the treatment group, it remained stable. International Registered Report Identifier (IRRID): RR2-10.2196/10098 %M 38048144 %R 10.2196/49735 %U https://cancer.jmir.org/2023/1/e49735 %U https://doi.org/10.2196/49735 %U http://www.ncbi.nlm.nih.gov/pubmed/38048144 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 12 %N %P e48329 %T A Web-Based Mindfulness-Based Cognitive Therapy for Couples Dealing With Chronic Cancer-Related Fatigue: Protocol for a Single-Arm Pilot Trial %A Müller,Fabiola %A van Dongen,Sophie %A van Woezik,Rosalie %A Tibosch,Marijke %A Tuinman,Marrit A %A Schellekens,Melanie P J %A Laurenceau,Jean-Philippe %A van der Lee,Marije %A Hagedoorn,Mariët %+ Department of Health Psychology, University Medical Center Groningen, University of Groningen, Hanzeplein 1, HPC FA12, Groningen, 9700 RB, Netherlands, 31 50 361 6669, f.muller@umcg.nl %K acceptability %K cancer %K chronic cancer-related fatigue %K couple intervention %K eMBCT %K fatigue %K feasibility %K partners %K pilot trial %K web-based mindfulness-based cognitive therapy %D 2023 %7 6.11.2023 %9 Protocol %J JMIR Res Protoc %G English %X Background: Chronic fatigue is a common symptom among patients who have been treated for cancer. Current psychosocial interventions typically target the patient alone, despite growing evidence suggesting that a couples’ approach can increase and broaden the efficacy of an intervention. Therefore, based on an existing web-based mindfulness-based cognitive therapy for patients, the couple intervention COMPANION was developed. Objective: The primary objectives of this study are to determine the acceptability of COMPANION and its potential efficacy in reducing fatigue in patients with cancer. Our secondary objectives are to examine the feasibility of the trial procedures and the potential working mechanisms of the couple intervention. Methods: We will conduct a single-arm pilot trial for couples (ie, patients with cancer with chronic fatigue and their partners). All couples are allocated to the web-based couple intervention that consists of psychoeducation, mindfulness, and cognitive-behavioral exercises. The 9 sessions of the intervention are supervised remotely by a trained therapist. Patients and partners will complete questionnaires before starting the intervention (T0), 2 weeks after completing the intervention (T1), and 1 month after T1 (T2). They will also fill out weekly diaries during the intervention period. A subsample of patients (n≈5) and partners (n≈5) as well as all the therapists providing COMPANION will participate in the final focus groups. Benchmark values have been defined to determine the acceptability (ie, ≥60% of couples complete the intervention and/or ≥70% of the participants are satisfied with the intervention) and potential efficacy (ie, a significant improvement in fatigue and/or a clinically relevant improvement in fatigue in 45% of the patients between T0 and T1) of the intervention. The trial procedures are deemed feasible if an average of at least three couples are included per recruiting month and/or adherence to the assessments is at least 65% for T1 and the diaries and 60% for T2. To establish potential working mechanisms, changes in affect, sleep, catastrophizing, partner communication and interactions, self-efficacy, mindfulness, and closeness will be examined. Quantitative outcomes will be interpreted along with the results from the focus groups. Results: Data collection is expected to be completed by March 2024. Conclusions: This pilot trial will test the first web-based mindfulness-based cognitive therapy for couples targeting chronic cancer-related fatigue. Findings will indicate whether proceeding with a randomized controlled trial is warranted. Trial Registration: ClinicalTrials.gov NCT05636696; https://clinicaltrials.gov/study/NCT05636696 International Registered Report Identifier (IRRID): DERR1-10.2196/48329 %M 37930767 %R 10.2196/48329 %U https://www.researchprotocols.org/2023/1/e48329 %U https://doi.org/10.2196/48329 %U http://www.ncbi.nlm.nih.gov/pubmed/37930767 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 9 %N %P e45518 %T Telehealth Availability for Cancer Care During the COVID-19 Pandemic: Cross-Sectional Study %A Marks,Victoria A %A Hsiang,Walter R %A Nie,James %A Umer,Waez %A Haleem,Afash %A Galal,Bayan %A Pak,Irene %A Kim,Dana %A Salazar,Michelle C %A Pantel,Haddon %A Berger,Elizabeth R %A Boffa,Daniel J %A Cavallo,Jaime A %A Leapman,Michael S %+ Yale School of Medicine, 333 Cedar St, New Haven, CT, 06510, United States, 1 203 785 2140, michael.leapman@yale.edu %K telehealth %K colorectal cancer %K breast cancer %K melanoma %K access to care %K COVID-19 pandemic %K telemedicine %K national survey %K cross-sectional %K cancer %K oncology %D 2023 %7 2.11.2023 %9 Original Paper %J JMIR Cancer %G English %X Background: Telehealth was an important strategy for maintaining continuity of cancer care during the coronavirus pandemic and has continued to play a role in outpatient care; however, it is unknown whether services are equally available across cancer hospitals. Objective: This study aimed to assess telehealth availability at cancer hospitals for new and established patients with common cancers to contextualize the impact of access barriers to technology on overall access to health care. Methods: We conducted a national cross-sectional secret shopper study from June to November 2020 to assess telehealth availability at cancer hospitals for new and established patients with colorectal, breast, and skin (melanoma) cancer. We examined facility-level factors to determine predictors of telehealth availability. Results: Of the 312 investigated facilities, 97.1% (n=303) provided telehealth services for at least 1 cancer site. Telehealth was less available to new compared to established patients (n=226, 72% vs n=301, 97.1%). The surveyed cancer hospitals more commonly offered telehealth visits for breast cancer care (n=266, 85%) and provided lower access to telehealth for skin (melanoma) cancer care (n=231, 74%). Most hospitals (n=163, 52%) offered telehealth for all 3 cancer types. Telehealth availability was weakly correlated across cancer types within a given facility for new (r=0.16, 95% CI 0.09-0.23) and established (r=0.14, 95% CI 0.08-0.21) patients. Telehealth was more commonly available for new patients at National Cancer Institute–designated facilities, medical school–affiliated facilities, and major teaching sites, with high total admissions and below-average timeliness of care. Telehealth availability for established patients was highest at Academic Comprehensive Cancer Programs, nongovernment and nonprofit facilities, medical school–affiliated facilities, Accountable Care Organizations, and facilities with a high number of total admissions. Conclusions: Despite an increase in telehealth services for patients with cancer during the COVID-19 pandemic, we identified differences in access across cancer hospitals, which may relate to measures of clinical volume, affiliation, and infrastructure. %M 37917149 %R 10.2196/45518 %U https://cancer.jmir.org/2023/1/e45518 %U https://doi.org/10.2196/45518 %U http://www.ncbi.nlm.nih.gov/pubmed/37917149 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e46552 %T Preference Elicitation and Treatment Decision-Making Among Men Diagnosed With Prostate Cancer: Randomized Controlled Trial Results of Healium %A Diefenbach,Michael A %A Marziliano,Allison %A Tagai,Erin K %A Pfister,Halie %A Lapitan,Emmanuel %A Hall,Simon J %A Vira,Manish %A Ibrahim,Said %A Aibel,Kelli %A Kutikov,Alexander %A Horwitz,Eric M %A Miyamoto,Curtis %A Reese,Adam C %A Miller,Suzanne M %+ Institute of Health System Science, The Feinstein Institutes for Medical Research, Northwell Health, 600 Community Drive, Suite 403, Manhasset, NY, 11030, United States, 1 516 600 1400, mdiefenbach@northwell.edu %K prostate cancer %K decision-making %K decision support %K decision tool %K web-based intervention %K patient preferences %K preference elicitation software %K preference %K RCT %K randomized controlled trial %K oncology %K prostate %K men’s health %K emotional %D 2023 %7 20.10.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Elicitation of patients’ preferences is an integral part of shared decision-making, the recommended approach for prostate cancer decision-making. Existing decision aids for this population often do not specifically focus on patients’ preferences. Healium is a brief interactive web-based decision aid that aims to elicit patients’ treatment preferences and is designed for a low health literate population. Objective: This study used a randomized controlled trial to evaluate whether Healium, designed to target preference elicitation, is as efficacious as Healing Choices, a comprehensive education and decision tool, in improving outcomes for decision-making and emotional quality of life. Methods: Patients diagnosed with localized prostate cancer who had not yet made a treatment decision were randomly assigned to the brief Healium intervention or Healing Choices, a decision aid previously developed by our group that serves as a virtual information center on prostate cancer diagnosis and treatment. Assessments were completed at baseline, 6 weeks, and 3 months post baseline, and included decisional outcomes (decisional conflict, satisfaction with decision, and preparation for decision-making), and emotional quality of life (anxiety/tension and depression), along with demographics, comorbidities, and health literacy. Results: A total of 327 individuals consented to participate in the study (171 were randomized to the Healium intervention arm and 156 were randomized to Healing Choices). The majority of the sample was non-Hispanic (272/282, 96%), White (239/314, 76%), married (251/320, 78.4%), and was on average 62.4 (SD 6.9) years old. Within both arms, there was a significant decrease in decisional conflict from baseline to 6 weeks postbaseline (Healium, P≤.001; Healing Choices, P≤.001), and a significant increase in satisfaction with one’s decision from 6 weeks to 3 months (Healium, P=.04; Healing Choices, P=.01). Within both arms, anxiety/tension (Healium, P=.23; Healing Choices, P=.27) and depression (Healium, P=.001; Healing Choices, P≤.001) decreased from baseline to 6 weeks, but only in the case of depression was the decrease statistically significant. Conclusions: Healium, our brief decision aid focusing on treatment preference elicitation, is as successful in reducing decisional conflict as our previously tested comprehensive decision aid, Healing Choices, and has the added benefit of brevity, making it the ideal tool for integration into the physician consultation and electronic medical record. Trial Registration: ClinicalTrials.gov NCT05800483; https://clinicaltrials.gov/study/NCT05800483 %M 37862103 %R 10.2196/46552 %U https://www.jmir.org/2023/1/e46552 %U https://doi.org/10.2196/46552 %U http://www.ncbi.nlm.nih.gov/pubmed/37862103 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 12 %N %P e49731 %T Enhancing Transsectoral Interdisciplinary Patient-Centered Care for Patients With Rare Cancers: Protocol for a Mixed Methods Process Evaluation %A Hinneburg,Jana %A Zacher,Sandro %A Berger-Höger,Birte %A Berger-Thürmel,Karin %A Kratzer,Vanessa %A Steckelberg,Anke %A Lühnen,Julia %A , %+ Institute for Health and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Magdeburger Str 8, Halle (Saale), 06112, Germany, 49 345 557 1220, sandro.zacher@medizin.uni-halle.de %K process evaluation %K study protocol %K logic model %K complex intervention %K coordination of care %K rare cancer %K mobile phone %D 2023 %7 12.10.2023 %9 Protocol %J JMIR Res Protoc %G English %X Background: Rare cancers account for approximately 24% of all new cancers. The category of rare tumor diseases includes almost 200 different entities. In particular, the treatment of patients with extensive care needs requires cooperation between service providers, both between sectors (outpatient and inpatient) and within sectors (eg, between different medical disciplines). The treatment pathway is associated with a high need for coordination and information sharing between providers. When crossing sectoral boundaries in the German health care system, interface problems between the outpatient and inpatient sectors can lead to gaps in care delivery. The multicomponent program Trans-sectoral Personalised Care Concept for Patients with Rare Cancers aims to optimize transsectoral cooperation and coordination of care to enhance patient involvement and the medical care coordination of patients with rare cancers. Objective: This process evaluation will contribute to answering questions about intervention fidelity and the implementation of transsectoral communication, identifying and describing the intended and nonintended effects of the intervention, and exploring the barriers to and facilitators of the implementation. Methods: We will include patients who participate in the intervention phase; all persons and staff involved in the development and implementation of the intervention (Onco Coach, psychologists, physicians on the contact platform, IT staff, and staff of the Bavarian Association of Statutory Health Insurance Physicians); physicians from the Ludwig-Maximilians-University Hospital Munich and the hospital of the Technical University Munich who are involved in the treatment of patients during the course of the project; and participating office–based hematologists and oncologists. Data collection will be conducted at the beginning, during, and at the end of the intervention using mixed methods. Data will be collected from questionnaires, document analyses, semistructured interviews, and structured observations and will cover different aspects of process evaluation. These include examining the context to explore existing patterns, changes in patterns, attitudes, and interactions; analyzing the implementation of intervention elements; and exploring the complex causal pathways and mediators of the intervention. Qualitative data will be analyzed using thematic analysis. The data will then be combined using between-methods triangulation. Results: This project received funding on March 1, 2022. The intervention phase and recruitment for the process evaluation began on March 1, 2023, and the recruitment is expected to end on September 30, 2025. At the time of protocol submission in June 2023, a total of 8 doctors from hematology and oncology practices were enrolled. Data collection began on March 14, 2023. Conclusions: The Trans-sectoral Personalised Care Concept for Patients with Rare Cancers project is a complex intervention that is to be implemented in an equally complex health care context. The process evaluation will help understand the influence of contextual factors and assess the mechanisms of change. Trial Registration: ISRCTN registry ISRCTN16441179; https://doi.org/10.1186/ISRCTN16441179 International Registered Report Identifier (IRRID): DERR1-10.2196/49731 %M 37824180 %R 10.2196/49731 %U https://www.researchprotocols.org/2023/1/e49731 %U https://doi.org/10.2196/49731 %U http://www.ncbi.nlm.nih.gov/pubmed/37824180 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e49476 %T Usability of Electronic Patient-Reported Outcome Measures for Older Patients With Cancer: Secondary Analysis of Data from an Observational Single Center Study %A Riedl,David %A Lehmann,Jens %A Rothmund,Maria %A Dejaco,Daniel %A Grote,Vincent %A Fischer,Michael J %A Rumpold,Gerhard %A Holzner,Bernhard %A Licht,Thomas %+ Ludwig Boltzmann Institute for Rehabilitation Research, Kurbadstrasse 14, Vienna, 1100, Austria, 43 13615220, david.riedl@rehabilitation.lbg.ac.at %K patient-reported outcomes %K completion rate %K geriatric %K age %K patient reported %K elderly %K older adults %K older adult %K cancer %K oncology %K survivor %K survivors %K questionnaire %K questionnaires %K self-reported %K geriatrics %K gerontology %K survey %K surveys %K mobile phone %D 2023 %7 21.9.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Patient-reported outcomes are considered the gold standard for assessing subjective health status in oncology patients. Electronic assessment of patient-reported outcomes (ePRO) has become increasingly popular in recent years in both clinical trials and practice. However, there is limited evidence on how well older patients with cancer can complete ePRO assessments. Objective: We aimed to investigate how well adult patients with cancer of different age ranges could complete ePRO assessments at home and in a treatment facility and to identify factors associated with the ability to complete questionnaires electronically. Methods: This retrospective longitudinal single-center study involved survivors of cancer who participated in inpatient rehabilitation. Patients completed ePRO assessments before rehabilitation at home (T1) and after rehabilitation at the facility (T2). We analyzed the rate of patients who could complete the ePRO assessment at T1 and T2, the proportion of patients who required assistance, and the time it took patients to complete standardized questionnaires. Multivariate logistic regression analyses were conducted to identify predictors of ePRO completion rate and the need for assistance. Results: Between 2017 and 2022, a total of 5571 patients were included in this study. Patients had a mean age of 60.3 (SD 12.2) years (range 18 to 93 years), and 1135 (20.3%) of them were classified as geriatric patients (>70 years). While more than 90% (5060/5571) of all patients completed the ePRO assessment, fewer patients in the age group of >70 years (924/1135, 81.4% at T1 vs 963/1135, 84.8% at T2) completed the assessment. Approximately 19% (1056/5571) of patients reported a need for assistance with the ePRO assessment at home, compared to 6.8% (304/4483) at the institution. Patients older than 70 years had a significantly higher need for assistance than those in younger age groups. Moreover, a gender difference was observed, with older women reporting a higher need for assistance than men (71-80 years: women requiring assistance 215/482, 44.6% vs men 96/350, 27.4%; P<.001 and >80 years: women 102/141, 72.3% vs men 57/112, 50.9%; P<.001). On average, patients needed 4.9 (SD 3.20) minutes to remotely complete a 30-item questionnaire (European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire) and patients in the older age groups took significantly longer compared to younger age groups. Lower age and higher physical functioning were the clearest predictors for both the ePRO completion rate and the need for assistance in the multivariate regression analysis. Conclusions: This study’s results indicate that ePRO assessment is feasible in older individuals with cancer, but older patients may require assistance (eg, from relatives) to complete home-based assessments. It may be more feasible to conduct assessments in-house in this population. Additionally, it is crucial to carefully consider which resources are necessary and available to support patients in using ePRO devices. %M 37733409 %R 10.2196/49476 %U https://www.jmir.org/2023/1/e49476 %U https://doi.org/10.2196/49476 %U http://www.ncbi.nlm.nih.gov/pubmed/37733409 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e45198 %T Intentions of Patients With Cancer and Their Relatives to Use a Live Chat on Familial Cancer Risk: Results From a Cross-Sectional Web-Based Survey %A Memenga,Paula %A Baumann,Eva %A Luetke Lanfer,Hanna %A Reifegerste,Doreen %A Geulen,Julia %A Weber,Winja %A Hahne,Andrea %A Müller,Anne %A Weg-Remers,Susanne %+ Hanover Center for Health Communication, Department of Journalism and Communication Research, Hanover University of Music, Drama and Media, Expo Plaza 12, Hannover, 30539, Germany, 49 5113100488, paula.memenga@ijk.hmtm-hannover.de %K live chat %K technology acceptance %K familial cancer risk %K Extended Unified Theory of Acceptance and Use of Technology %K cancer information seeking %K patients and relatives with cancer %K patients with cancer %K cancer risk %K genetic testing %K diagnosis %K severity %K cross-sectional survey %D 2023 %7 28.8.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: An important prerequisite for actively engaging in cancer prevention and early detection measures, which is particularly recommended in cases of familial cancer risk, is the acquisition of information. Although a lot of cancer information is available, not all social groups are equally well reached because information needs and communicative accessibility differ. Previous research has shown that a live chat service provided by health professionals could be an appropriate, low-threshold format to meet individual information needs on sensitive health topics such as familial cancer risk. An established German Cancer Information Service is currently developing such a live chat service. As it is only worthwhile if accepted by the target groups, formative evaluation is essential in the course of the chat service’s development and implementation. Objective: This study aimed to explore the acceptance of a live chat on familial cancer risk by patients with cancer and their relatives (research question [RQ] 1) and examine the explanatory power of factors associated with their intentions to use such a service (RQ2). Guided by the Extended Unified Theory of Acceptance and Use of Technology (UTAUT2), we examined the explanatory power of the following UTAUT2 factors: performance expectancy, effort expectancy, social influence, facilitating conditions, and habit, supplemented by perceived information insufficiency, perceived susceptibility, perceived severity, and cancer diagnosis as additional factors related to information seeking about familial cancer. Methods: We conducted a cross-sectional survey via a German web-based access panel in March 2022 that was stratified by age, gender, and education (N=1084). The participants are or have been diagnosed with cancer themselves (n=144) or have relatives who are or have been affected (n=990). All constructs were measured with established scales. To answer RQ1, descriptive data (mean values and distribution) were used. For RQ2, a blockwise multiple linear regression analysis was conducted. Results: Overall, 32.7% of participants were (rather) willing, 28.9% were undecided, and 38.4% were (rather) not willing to use a live chat on familial cancer risk in the future. A multiple linear regression analysis explained 47% of the variance. It revealed that performance expectancy, social influence, habit, perceived susceptibility, and perceived severity were positively associated with the intention to use a live chat on familial cancer risk. Effort expectancy, facilitating conditions, information insufficiency, and cancer diagnosis were not related to usage intentions. Conclusions: A live chat seems promising for providing information on familial cancer risk. When promoting the service, the personal benefits should be addressed in particular. UTAUT2 is an effective theoretical framework for explaining live chat usage intentions and does not need to be extended in the context of familial cancer risk. %M 37639311 %R 10.2196/45198 %U https://www.jmir.org/2023/1/e45198 %U https://doi.org/10.2196/45198 %U http://www.ncbi.nlm.nih.gov/pubmed/37639311 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 10 %N %P e49490 %T Perceived Patient Workload and Its Impact on Outcomes During New Cancer Patient Visits: Analysis of a Convenience Sample %A Elkefi,Safa %A Asan,Onur %+ School of Systems and Enterprises, Stevens Institute of Technology, 1 Castle Point Terrace, Hoboken, NJ, 07030, United States, 1 4145264330, oasan@stevens.edu %K health care %K cancer patients’ workload %K trust %K satisfaction %K health information technology %D 2023 %7 18.8.2023 %9 Original Paper %J JMIR Hum Factors %G English %X Background: Studies exploring the workload in health care focus on the doctors’ perspectives. The ecology of the health care environment is critical and different for doctors and patients. Objective: In this study, we explore the patient workload among newly diagnosed patients with cancer during their first visit and its impact on the patient’s perceptions of the quality of care (their trust in their doctors, their satisfaction with the care visits, their perception of technology use). Methods: We collected data from the Hackensack Meridian Health, John Theurer Cancer Center between February 2021 and May 2022. The technology use considered during the visit is related to doctors’ use of electronic health records. A total of 135 participants were included in the study. Most participants were 50-64 years old (n=91, 67.41%). A majority (n=81, 60%) of them were White, and only (n=16, 11.85%) went to graduate schools. Results: The findings captured the significant effect of overall workload on trust in doctors and perception of health IT use within the visits. On the other hand, the overall workload did not impact patients’ satisfaction during the visit. A total of 80% (n=108) of patients experienced an overall high level of workload. Despite almost 55% (n=75) of them experiencing a high mental load, 71.1% (n=96) reported low levels of effort, 89% (n=120) experienced low time pressure, 85.2% (n=115) experienced low frustration levels, and 69.6% (n=94) experienced low physical activity. The more overall workload patients felt, the less they trusted their doctors (odds ratio [OR] 0.059, 95% CI 0.001-2.34; P=.007). Low trust was also associated with the demanding mental tasks in the visits (OR 0.055, 95% CI 0.002-2.64; P<.001), the physical load (OR 0.194, 95% CI 0.004-4.23; P<.001), the time load (OR 0.183, 95% CI 0.02-2.35; P=.046) the effort needed to cope with the environment (OR 0.163, 95% CI 0.05-1.69; P<.001), and the frustration levels (OR 0.323, 95% CI 0.04-2.55; P=.03). The patients’ perceptions of electronic health record use during the visit were negatively impacted by the overall workload experienced by the patients (OR 0.315, 95% CI 0.08-6.35; P=.01) and the high frustration level experienced (OR 0.111, 95% CI 0.015-3.75; P<.001). Conclusions: The study’s findings established pathways for future research and have implications for cancer patients’ workload. Better technology design and use can minimize perceived workload, which might contribute to the trust relationship between doctors and patients in this critical environment. Future human factors work needs to explore the workload and driving factors in longitudinal studies and assess whether these workloads might contribute to unintended patient outcomes and medical errors. %M 37594798 %R 10.2196/49490 %U https://humanfactors.jmir.org/2023/1/e49490 %U https://doi.org/10.2196/49490 %U http://www.ncbi.nlm.nih.gov/pubmed/37594798 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 9 %N %P e45707 %T Using Health-Related Social Media to Understand the Experiences of Adults With Lung Cancer in the Era of Immuno-Oncology and Targeted Therapies: Observational Study %A Booth,Alison %A Manson,Stephanie %A Halhol,Sonia %A Merinopoulou,Evie %A Raluy-Callado,Mireia %A Hareendran,Asha %A Knoll,Stefanie %+ Data Analytics, Evidera, The Ark, 201 Talgarth Rd, London, W6 8BJ,, United Kingdom, 44 208 576 5064, sonia.halhol@evidera.com %K non-small cell lung cancer %K data science %K machine learning %K natural language processing %K social media data %K patient experience %K patient preference %K immunotherapy %K targeted therapies %K lung cancer %K social media %D 2023 %7 12.7.2023 %9 Original Paper %J JMIR Cancer %G English %X Background: The treatment of non–small cell lung cancer (NSCLC) has evolved dramatically with the approval of immuno-oncology (IO) and targeted therapies (TTs). Insights on the patient experience with these therapies and their impacts are lacking. Health-related social media has been increasingly used by patients to share their disease and treatment experiences, thus representing a valuable source of real-world data to understand the patient’s voice and uncover potential unmet needs. Objective: This study aimed to describe the experiences of patients with NSCLC as reported in discussions posted on lung cancer–specific social media with respect to their disease symptoms and associated impacts. Methods: Publicly available posts (2010-2019) were extracted from selected lung cancer– or NSCLC-specific websites. Social media users (patients and caregivers posting on these websites) were stratified by metastatic- and adjuvant-eligible subgroups and treatment received using natural language processing (NLP) and machine learning methods. Automated identification of symptoms was conducted using NLP. Qualitative data analysis (QDA) was conducted on random samples of posts mentioning pain-related, fatigue-related, respiratory-related, or infection-related symptoms to capture the patient experience with these and associated impacts. Results: Overall, 1724 users (50,390 posts) and 574 users (4531 posts) were included in the metastatic group and adjuvant group, respectively. Among users in the metastatic group, pain, discomfort, and fatigue were the most commonly mentioned symptoms (49.7% and 39.6%, respectively), and in the QDA (258 posts from 134 users), the most frequent impacts related to physical impairments, sleep, and eating habits. Among users in the adjuvant group, pain, discomfort, and respiratory symptoms were the most commonly mentioned (44.8% and 23.9%, respectively), and impacts identified in the QDA (154 posts from 92 users) were mostly related to physical functioning. Conclusions: Findings from this exploratory observational analysis of social media among patients and caregivers informed the lived experience of NSCLC in the era of novel therapies, shedding light on most reported symptoms and their impacts. These findings can be used to inform future research on NSCLC treatment development and patient management. %M 37436789 %R 10.2196/45707 %U https://cancer.jmir.org/2023/1/e45707 %U https://doi.org/10.2196/45707 %U http://www.ncbi.nlm.nih.gov/pubmed/37436789 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 9 %N %P e40875 %T Perceived Barriers and Facilitators in Using Patient-Reported Outcome Systems for Cancer Care: Systematic Mapping Study %A Laitio,Anna-Mari %A Giunti,Guido %A Halonen,Raija %+ Faculty of Information Technology and Electrical Engineering, University of Oulu, Erkki Koiso-Kanttilan katu 3, Oulu, 90570, Finland, 358 405499582, anna-mari.laitio@oulu.fi %K patient-reported outcome system %K barriers %K facilitators %K cancer %K health care professionals %D 2023 %7 28.6.2023 %9 Review %J JMIR Cancer %G English %X Background: Cancer is a major global health problem. Patient-reported outcome (PRO) systems have been developed to support the treatment of patients with cancer. Although clear evidence of the benefits of the routine use of electronic patient-reported outcomes (ePROs) exists, engaging physicians in using these systems has been challenging. Objective: This study aims to identify and analyze what is currently known about health care professionals’ (HCPs) perceived barriers and facilitators that exist and influence the use of ePRO systems for cancer care. Methods: We carried out a systematic mapping study by conducting searches of 3 databases (Association for Computing Machinery, PubMed, and Scopus). Eligible papers were published between 2010 and 2021, and they described HCPs’ perspectives on using ePROs. The data on the included papers were extracted, a thematic meta-synthesis was performed, and 7 themes were summarized into 3 categories. Results: A total of 17 papers were included in the study. The HCPs’ perceived barriers and facilitators of using ePROs can be summarized into 7 themes: clinical workflow, organization and infrastructure, value to patients, value to HCPs, digital health literacy, usability, and data visualization and perceived features. These themes can be further summarized into 3 categories: work environment, value to users, and suggested features. According to the study, ePROs should be interoperable with hospital electronic health records and adapted to the hospital workflow. HCPs should get appropriate support for their use. Additional features are needed for ePROs, and special attention should be paid to data visualization. Patients should have the option to use web-based ePROs at home and complete it at the time most valuable to the treatment. Patients’ ePRO notes need attention during clinical visits, but ePRO use should not limit patient-clinician face-to-face communication. Conclusions: The study revealed that several aspects need improvement in ePROs and their operating environments. By improving these aspects, HCPs’ experience with ePROs will enhance, and thus, there will be more facilitating factors for HCPs to use ePROs than those available today. More national and international knowledge about using ePROs is still needed to cover the need for information to develop them and their operating environments to meet the needs of HCPs. %M 37379076 %R 10.2196/40875 %U https://cancer.jmir.org/2023/1/e40875 %U https://doi.org/10.2196/40875 %U http://www.ncbi.nlm.nih.gov/pubmed/37379076 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 9 %N %P e41740 %T Navigating the Cancer Journey Using Web-Based Information: Grounded Theory Emerging From the Lived Experience of Cancer Patients and Informal Caregivers With Implications for Web-Based Content Design %A Thiessen,Maclean %A Raffin Bouchal,Shelly %A Tang,Patricia A %A Sinclair,Shane %+ Department of Internal Medicine, Rady Faculty of Health Sciences, University of Manitoba, ON2040 - 675 McDermot Ave., Winnipeg, MB, R3E 0W2, Canada, 1 204 787 4247, maclean.thiessen@umanitoba.ca %K health information behavior %K neoplasm %K theory %K internet %K information needs %K adults %D 2023 %7 17.5.2023 %9 Original Paper %J JMIR Cancer %G English %X Background: The internet is an important source of information for many informal caregivers and patients living with cancer. A better understanding of how individuals use the internet to meet their informational needs is important for guiding intervention development. Objective: The objectives of this study were to develop a theory describing why individuals living with cancer use the internet to find information, characterize the challenges faced with existing web-based content, and provide recommendations for web-based content design. Methods: Adults (≥18 years) with a history of being patients with cancer or informal caregivers were recruited from Alberta, Canada. After providing informed consent, participants were engaged through digitally recorded one-on-one semistructured interviews, focus groups, a web-based discussion board, and emails. Classic grounded theory guided the study procedures. Results: A total of 21 participants took part in 23 one-on-one interviews and 5 focus groups. The mean age was 53 (SD 15.3) years. Breast, gynecological, and hematological cancers were the most common cancer types (4/21, 19% each). In total, 67% (14/21) of patients, 29% (6/21) of informal caregivers, and 5% (1/21) of individuals reporting both roles participated. Participants experienced many new challenges in their cancer journey and used the internet to become better oriented to them. For each challenge, internet searching attempted to address one or more of 3 key orientation questions: why the challenge was happening, what to expect, and options for managing it. Better orientation resulted in improved physical and psychosocial well-being. Content that was well laid out, concise, free of distractions, and that addressed the key orientation questions was identified as the most helpful in assisting with orientation. Creators of web-based content are encouraged to 1) clearly identify the cancer challenge and population the content is addressing, as well as the presence of any potentially distressing information; 2) provide versions of the content in different formats, including printer-friendly, audio, video, and alternative languages; 3) state who created the content, including the individuals, organizations, and processes involved; 4) place hyperlinks after the key orientation questions have been addressed; and 5) ensure that the content is optimized for discovery by search engines (ie, Google). Conclusions: Web-based content plays an essential role for many living with cancer. Clinicians are encouraged to take active steps to help patients and informal caregivers find web-based content that meets their informational needs. Content creators also have a responsibility to ensure that the content they create assists and does not hinder those navigating the cancer journey. Research is needed to better understand the many challenges that individuals living with cancer face, including how they are temporally related. In addition, how to optimize web-based content for specific cancer challenges and populations should be considered an important area for future research. %M 37195760 %R 10.2196/41740 %U https://cancer.jmir.org/2023/1/e41740 %U https://doi.org/10.2196/41740 %U http://www.ncbi.nlm.nih.gov/pubmed/37195760 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 9 %N %P e39246 %T Association of the Extent of Internet Use by Patients With Cancer With Social Support Among Patients and Change in Patient-Reported Treatment Outcomes During Inpatient Rehabilitation: Cross-sectional and Longitudinal Study %A Lange-Drenth,Lukas %A Schulz,Holger %A Endsin,Gero %A Bleich,Christiane %+ Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52, Hamburg, 20246, Germany, 49 040 7410 ext 56811, l.lange-drenth@uke.de %K internet %K internet use %K social support %K perceived social support %K inpatients %K patient-reported outcome measures %K cancer %K rehabilitation %K distress %K fatigue %K pain %D 2023 %7 17.5.2023 %9 Original Paper %J JMIR Cancer %G English %X Background: Given the increasing number of cancer survivors and their rising survival rates, rehabilitation plays an increasingly important role. Social support among patients is an essential element of inpatient and day care rehabilitation. The internet can empower patients with cancer to become more active health care consumers and facilitate information and supportive care needs. By contrast, therapists suspect that high internet use during rehabilitation may severely limit social interactions between patients, thus interfering with the patients’ rehabilitation program and jeopardizing treatment success. Objective: We hypothesized that the extent of internet use would be negatively related to social support among patients with cancer during their clinical stay as well as fewer improvements in patient-reported treatment outcomes from the first to the last day of their clinical stay. Methods: Patients with cancer participated during their inpatient rehabilitation. Cross-sectional data, such as the extent of participants’ internet use and perceived social support among patients, were collected during the last week of their clinic stay. The treatment outcomes, that is, participants’ levels of distress, fatigue, and pain, were collected on the first and last day of the clinic stay. We used multiple linear regression analysis to study the association between the extent of internet use and social support among patients with cancer. We used linear mixed model analyses to study the association between the extent of internet use by patients with cancer and the change in patient-reported treatment outcomes. Results: Of the 323 participants, 279 (86.4%) participants reported that they used the internet. The extent of the internet use (t315=0.78; P=.43) was not significantly associated with the perceived social support among the participants during their clinical stay. In addition, the extent of participants’ internet use during their clinical stay was not associated with changes in participants’ levels of distress (F1,299=0.12; P=.73), fatigue (F1,299=0.19; P=.67), and pain (F1,303=0.92; P=.34) from the first to the last day of their clinical stay. Conclusions: The extent of internet use does not seem to be negatively associated with the perceived social support among patients with cancer or with the change in patients’ levels of distress, fatigue, or pain from the first to the last day of their clinical stay. %M 37195742 %R 10.2196/39246 %U https://cancer.jmir.org/2023/1/e39246 %U https://doi.org/10.2196/39246 %U http://www.ncbi.nlm.nih.gov/pubmed/37195742 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 9 %N %P e40917 %T Exploring the Acceptability of Text Messages to Inform and Support Shared Decision-making for Colorectal Cancer Screening: Online Panel Survey %A Hwang,Soohyun %A Lazard,Allison J %A Reffner Collins,Meredith K %A Brenner,Alison T %A Heiling,Hillary M %A Deal,Allison M %A Crockett,Seth D %A Reuland,Daniel S %A Elston Lafata,Jennifer %+ Department of Health Policy and Management, Gillings School of Global Public Health, University of North Carolina Chapel Hill, 135 Dauer Dr, Chapel Hill, NC, 27599, United States, 1 7347076635, soohwang@live.unc.edu %K text messages %K shared decision-making %K colorectal cancer %K cancer screening %K mHealth %K cancer %K health care %K marginalized groups %D 2023 %7 5.5.2023 %9 Original Paper %J JMIR Cancer %G English %X Background: While online portals may be helpful to engage patients in shared decision-making at the time of cancer screening, because of known disparities in patient portal use, sole reliance on portals to support cancer screening decision-making could exacerbate well-known disparities in this health care area. Innovative approaches are needed to engage patients in health care decision-making and to support equitable shared decision-making. Objective: We assessed the acceptability of text messages to engage sociodemographically diverse individuals in colorectal cancer (CRC) screening decisions and support shared decision-making in practice. Methods: We developed a brief text message program offering educational information consisting of components of shared decision-making regarding CRC screening (eg, for whom screening is recommended, screening test options, and pros/cons of options). The program and postprogram survey were offered to members of an online panel. The outcome of interest was program acceptability measured by observed program engagement, participant-reported acceptability, and willingness to use similar programs (behavioral intent). We evaluated acceptability among historically marginalized categories of people defined by income, literacy, and race. Results: Of the 289 participants, 115 reported having a low income, 146 were Black/African American, and 102 had less than extreme confidence in their health literacy. With one exception, we found equal or greater acceptability, regardless of measure, within each of the marginalized categories of people compared to their counterparts. The exception was that participants reporting an income below US $50,000 were less likely to engage with sufficient content of the program to learn that there was a choice among different CRC screening tests (difference –10.4%, 95% CI –20.1 to –0.8). Of note, Black/African American participants reported being more likely to sign up to receive text messages from their doctor’s office compared to white participants (difference 18.7%, 95% CI 7.0-30.3). Conclusions: Study findings demonstrate general acceptance of text messages to inform and support CRC screening shared decision-making. %M 37145859 %R 10.2196/40917 %U https://cancer.jmir.org/2023/1/e40917 %U https://doi.org/10.2196/40917 %U http://www.ncbi.nlm.nih.gov/pubmed/37145859 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e41179 %T Paradigmatic Approach to Support Personalized Counseling With Digital Health (iKNOW) %A Speiser,Dorothee %A Heibges,Maren %A Besch,Laura %A Hilger,Caren %A Keinert,Marie %A Klein,Katharina %A Rauwolf,Gudrun %A Schmid,Christine %A Schulz-Niethammer,Sven %A Stegen,Steffi %A Westfal,Viola %A Witzel,Isabell %A Zang,Benedikt %A Kendel,Friederike %A Feufel,Markus A %+ Department of Gynecology with Breast Center, Hereditary Breast and Ovarian Cancer Center, Charité – Universitätsmedizin Berlin, Charitéplatz 1, Berlin, 10117, Germany, 49 30 450 664 ext 263, dorothee.speiser@charite.de %K hereditary breast and ovarian cancer %K BRCA %K genetic counseling %K digital health %K online counseling tool %K user-centered design principles %K risk communication %K cancer risk %K hereditary cancer %K breast cancer %K ovarian cancer %D 2023 %7 21.4.2023 %9 Viewpoint %J JMIR Form Res %G English %X iKNOW is the first evidence-based digital tool to support personalized counseling for women in Germany with a hereditary cancer risk. The counseling tool is designed for carriers of pathogenic gBRCA (germline breast cancer gene) variants that increase the lifetime risk of breast and ovarian cancer. Carriers of pathogenic variants are confronted with complex, individualized risk information, and physicians must be able to convey this information in a comprehensible way to enable preference-sensitive health decisions. In this paper, we elaborate on the clinical, regulatory, and practical premises of personalized counseling in Germany. By operationalizing these premises, we formulate 5 design principles that, we suggest, are specific enough to develop a digital tool (eg, iKNOW), yet wide-ranging enough to inform the development of counseling tools for personalized medicine more generally: (1) digital counseling tools should implement the current standard of care (eg, based on guidelines); (2) digital counseling tools should help to both standardize and personalize the counseling process (eg, by enabling the preference-sensitive selection of counseling contents from a common information base); (3) digital counseling tools should make complex information easy to access both cognitively (eg, by using evidenced-based risk communication formats) and technically (eg, by means of responsive design for various devices); (4) digital counseling tools should respect the counselee’s data privacy rights (eg, through strict pseudonymization and opt-in consent); and (5) digital counseling tools should be systematically and iteratively evaluated with the users in mind (eg, using formative prototype testing to ensure a user-centric design and a summative multicenter, randomized controlled trial). On the basis of these paradigmatic design principles, we hope that iKNOW can serve as a blueprint for the development of more digital innovations to support personalized counseling approaches in cancer medicine. %M 37083496 %R 10.2196/41179 %U https://formative.jmir.org/2023/1/e41179 %U https://doi.org/10.2196/41179 %U http://www.ncbi.nlm.nih.gov/pubmed/37083496 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 9 %N %P e43609 %T Scanxiety Conversations on Twitter: Observational Study %A Bui,Kim Tam %A Li,Zoe %A Dhillon,Haryana M %A Kiely,Belinda E %A Blinman,Prunella %+ Medical Oncology, Concord Cancer Centre, 1A Hospital Road, Concord, 2139, Australia, 61 297675000, tam.bui@health.nsw.gov.au %K anxiety %K cancer %K medical imaging %K oncology %K psycho-oncology %K social media %K twitter %K tweet %K scanxiety %K mental health %K sentiment analysis %K oncology %K thematic analysis %K screen time %K scan %K hyperawareness %K radiology %D 2023 %7 19.4.2023 %9 Original Paper %J JMIR Cancer %G English %X Background: Scan-associated anxiety (or “scanxiety”) is commonly experienced by people having cancer-related scans. Social media platforms such as Twitter provide a novel source of data for observational research. Objective: We aimed to identify posts on Twitter (or “tweets”) related to scanxiety, describe the volume and content of these tweets, and describe the demographics of users posting about scanxiety. Methods: We manually searched for “scanxiety” and associated keywords in cancer-related, publicly available, English-language tweets posted between January 2018 and December 2020. We defined “conversations” as a primary tweet (the first tweet about scanxiety) and subsequent tweets (interactions stemming from the primary tweet). User demographics and the volume of primary tweets were assessed. Conversations underwent inductive thematic and content analysis. Results: A total of 2031 unique Twitter users initiated a conversation about scanxiety from cancer-related scans. Most were patients (n=1306, 64%), female (n=1343, 66%), from North America (n=1130, 56%), and had breast cancer (449/1306, 34%). There were 3623 Twitter conversations, with a mean of 101 per month (range 40-180). Five themes were identified. The first theme was experiences of scanxiety, identified in 60% (2184/3623) of primary tweets, which captured the personal account of scanxiety by patients or their support person. Scanxiety was often described with negative adjectives or similes, despite being experienced differently by users. Scanxiety had psychological, physical, and functional impacts. Contributing factors to scanxiety included the presence and duration of uncertainty, which was exacerbated during the COVID-19 pandemic. The second theme (643/3623, 18%) was the acknowledgment of scanxiety, where users summarized or labeled an experience as scanxiety without providing emotive clarification, and advocacy of scanxiety, where users raised awareness of scanxiety without describing personal experiences. The third theme was messages of support (427/3623, 12%), where users expressed well wishes and encouraged positivity for people experiencing scanxiety. The fourth theme was strategies to reduce scanxiety (319/3623, 9%), which included general and specific strategies for patients and strategies that required improvements in clinical practice by clinicians or health care systems. The final theme was research about scanxiety (50/3623, 1%), which included tweets about the epidemiology, impact, and contributing factors of scanxiety as well as novel strategies to reduce scanxiety. Conclusions: Scanxiety was often a negative experience described by patients having cancer-related scans. Social media platforms like Twitter enable individuals to share their experiences and offer support while providing researchers with unique data to improve their understanding of a problem. Acknowledging scanxiety as a term and increasing awareness of scanxiety is an important first step in reducing scanxiety. Research is needed to guide evidence-based approaches to reduce scanxiety, though some low-cost, low-resource practical strategies identified in this study could be rapidly introduced into clinical care. %M 37074770 %R 10.2196/43609 %U https://cancer.jmir.org/2023/1/e43609 %U https://doi.org/10.2196/43609 %U http://www.ncbi.nlm.nih.gov/pubmed/37074770 %0 Journal Article %@ 1929-073X %I JMIR Publications %V 12 %N %P e45382 %T Impact of Social Isolation, Physician-Patient Communication, and Self-perception on the Mental Health of Patients With Cancer and Cancer Survivors: National Survey Analysis %A Choudhury,Avishek %+ Industrial and Management Systems Engineering, Benjamin M Statler College of Engineering and Mineral Resources, West Virginia University, 1374 Evansdale Drive, 321 Engineering Sciences Building, Morgantown, WV, 26506, United States, 1 304 293 9431, avishek.choudhury@mail.wvu.edu %K cancer communication %K cancer stigma %K mental health %K social isolation %K cancer survivorship %K patient-centeredness %D 2023 %7 7.4.2023 %9 Original Paper %J Interact J Med Res %G English %X Background: Cancer is perceived as a life-threatening, fear-inducing, and stigmatized disease. Most patients with cancer and cancer survivors commonly experience social isolation, negative self-perception, and psychological distress. The heavy toll that cancer takes on patients continues even after treatment. It is common for many patients with cancer to feel uncertain about their future. Some undergo anxiety, loneliness, and fear of getting cancer again. Objective: This study examined the impact of social isolation, self-perception, and physician-patient communication on the mental health of patients with cancer and cancer survivors. The study also explored the impact of social isolation and physician-patient communication on self-perception. Methods: This retrospective study used restricted data from the 2021 Health Information National Trends Survey (HINTS), which collected data from January 11, 2021, to August 20, 2021. We used the partial least squares structural equation modeling (PLS-SEM) method for data analysis. We checked for quadratic effects among all the paths connecting social isolation, poor physician-patient communication, mental health (measured using the 4-item Patient Health Questionnaire [PHQ-4]), and negative self-perception. The model was controlled for confounding factors such as respondents’ annual income, education level, and age. Bias-corrected and accelerated (BCA) bootstrap methods were used to estimate nonparametric CIs. Statistical significance was tested at 95% CI (2-tailed). We also conducted a multigroup analysis in which we created 2 groups. Group A consisted of newly diagnosed patients with cancer who were undergoing cancer treatment during the survey or had received cancer treatment within the last 12 months (receipt of cancer treatment during the COVID-19 pandemic). Group B consisted of respondents who had received cancer treatment between 5 and 10 years previously (receipt of cancer treatment before the COVID-19 pandemic). Results: The analysis indicated that social isolation had a quadratic effect on mental health, with higher levels of social isolation associated with worse mental health outcomes up to a certain point. Self-perception positively affected mental health, with higher self-perception associated with better mental health outcomes. In addition, physician-patient communication significantly indirectly affected mental health via self-perception. Conclusions: The findings of this study provide important insights into the factors that affect the mental health of patients with cancer. Our results suggest that social isolation, negative self-perception, and communication with care providers are significantly related to mental health in patients with cancer. %M 37027201 %R 10.2196/45382 %U https://www.i-jmr.org/2023/1/e45382 %U https://doi.org/10.2196/45382 %U http://www.ncbi.nlm.nih.gov/pubmed/37027201 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 12 %N %P e39740 %T Improving Cognitive Function Through High-Intensity Interval Training in Breast Cancer Patients Undergoing Chemotherapy: Protocol for a Randomized Controlled Trial %A Wilson,Rebekah %A Kang,Dong-Woo %A Tahbaz,Meghan %A Norris,Mary %A Uno,Hajime %A Ligibel,Jennifer %A Guenette,Jeffrey %A Christopher,Cameron %A Dieli-Conwright,Christina %+ Division of Population Sciences, Department of Medical Oncology, Dana-Farber Cancer Institute, 375 Longwood Avenue, Boston, MA, 02215, United States, 1 (617) 582 8321, christinam_dieli-conwright@dfci.harvard.edu %K cognitive function %K high-intensity interval training %K exercise %K breast cancer %K chemotherapy %K magnetic resonance imaging %K MRI %D 2023 %7 7.4.2023 %9 Protocol %J JMIR Res Protoc %G English %X Background: More than 75% of patients with breast cancer treated with chemotherapy experience cognitive impairments (eg, memory and attention problems), commonly known as chemo-brain. Exercise, especially aerobic high-intensity interval training (HIIT), is associated with better cognitive function in healthy populations. However, clinical trials testing the impact of exercise interventions on chemotherapy-induced cognitive decline in patients with cancer are lacking, and the mechanisms through which exercise could improve cognitive function are unclear. Objective: The objective of the Improving Cognitive Function Through High-Intensity Interval Training in Breast Cancer Patients Undergoing Chemotherapy trial is to examine the effects of HIIT on cognitive function in patients with breast cancer undergoing chemotherapy. Methods: This 2-arm, single-center, pilot randomized controlled trial will randomize 50 patients with breast cancer undergoing chemotherapy to HIIT or attention control. The HIIT group will perform a supervised 16-week, thrice-weekly intervention, with each session including a 5-minute warm-up at 10% maximal power output (POmax), 10 sets of alternating 1-minute high-intensity (90% POmax) and 1-minute recovery (10% POmax) intervals, and a 5-minute cooldown (10% POmax). The attention control group will receive a stretching program with no exercise components and be asked to maintain their exercise levels for 16 weeks. The primary outcomes of the study are executive function and memory measured using the National Institutes of Health toolbox and resting-state connectivity and diffusion tensor imaging microstructure evaluated using magnetic resonance imaging. The secondary and tertiary outcomes include cardiorespiratory fitness, body composition, physical fitness, and psychosocial health. The study has been approved by the institutional review board of the Dana-Farber Cancer Institute (20-222). Results: The trial was funded in January 2019, with recruitment started in June 2021. As of May 2022, a total of 4 patients have consented and been randomized (n=2, 50% to exercise; n=1, 25% to control; and n=1, 25% nonrandomized). Trial completion is expected in January 2024. Conclusions: This first-of-its-kind study incorporates a novel exercise intervention (ie, HIIT) and comprehensive cognitive measures. If positive, our findings will establish the pilot efficacy of HIIT on chemotherapy-induced cognitive function in patients with breast cancer, providing the foundation for future larger phase-II and phase-III trials to confirm the findings and potentially establish HIIT as a standard of care for women undergoing chemotherapy for breast cancer. Trial Registration: ClinicalTrials.gov NCT04724499; https://clinicaltrials.gov/ct2/show/NCT04724499 International Registered Report Identifier (IRRID): DERR1-10.2196/39740 %M 37027186 %R 10.2196/39740 %U https://www.researchprotocols.org/2023/1/e39740 %U https://doi.org/10.2196/39740 %U http://www.ncbi.nlm.nih.gov/pubmed/37027186 %0 Journal Article %@ 2152-7202 %I JMIR Publications %V 15 %N %P e42704 %T Acceptability of Automated Robotic Clinical Breast Examination: Survey Study %A Jenkinson,George P %A Houghton,Natasha %A van Zalk,Nejra %A Waller,Jo %A Bello,Fernando %A Tzemanaki,Antonia %+ Bristol Robotics Laboratory, Department of Mechanical Engineering, University of Bristol, T Block, UWE Frenchay Campus, Coldharbour Lane, Bristol, BS16 1QY, United Kingdom, 44 0117 328 6913, george.jenkinson.2018@bristol.ac.uk %K breast cancer detection %K automated diagnosis %K breast examination %K health care robotics %K patient and public involvement %K participatory design %K user acceptability %K mammography %K breast cancer %D 2023 %7 3.4.2023 %9 Original Paper %J J Particip Med %G English %X Background: In the United Kingdom, women aged 50 to 70 years are invited to undergo mammography. However, 10% of invasive breast cancers occur in women aged ≤45 years, representing an unmet need for young women. Identifying a suitable screening modality for this population is challenging; mammography is insufficiently sensitive, whereas alternative diagnostic methods are invasive or costly. Robotic clinical breast examination (R-CBE)—using soft robotic technology and machine learning for fully automated clinical breast examination—is a theoretically promising screening modality with early prototypes under development. Understanding the perspectives of potential users and partnering with patients in the design process from the outset is essential for ensuring the patient-centered design and implementation of this technology. Objective: This study investigated the attitudes and perspectives of women regarding the use of soft robotics and intelligent systems in breast cancer screening. It aimed to determine whether such technology is theoretically acceptable to potential users and identify aspects of the technology and implementation system that are priorities for patients, allowing these to be integrated into technology design. Methods: This study used a mixed methods design. We conducted a 30-minute web-based survey with 155 women in the United Kingdom. The survey comprised an overview of the proposed concept followed by 5 open-ended questions and 17 closed questions. Respondents were recruited through a web-based survey linked to the Cancer Research United Kingdom patient involvement opportunities web page and distributed through research networks’ mailing lists. Qualitative data generated via the open-ended questions were analyzed using thematic analysis. Quantitative data were analyzed using 2-sample Kolmogorov-Smirnov tests, 1-tailed t tests, and Pearson coefficients. Results: Most respondents (143/155, 92.3%) indicated that they would definitely or probably use R-CBE, with 82.6% (128/155) willing to be examined for up to 15 minutes. The most popular location for R-CBE was at a primary care setting, whereas the most accepted method for receiving the results was an on-screen display (with an option to print information) immediately after the examination. Thematic analysis of free-text responses identified the following 7 themes: women perceive that R-CBE has the potential to address limitations in current screening services; R-CBE may facilitate increased user choice and autonomy; ethical motivations for supporting R-CBE development; accuracy (and users’ perceptions of accuracy) is essential; results management with clear communication is a priority for users; device usability is important; and integration with health services is key. Conclusions: There is a high potential for the acceptance of R-CBE in its target user group and a high concordance between user expectations and technological feasibility. Early patient participation in the design process allowed the authors to identify key development priorities for ensuring that this new technology meets the needs of users. Ongoing patient and public involvement at each development stage is essential. %M 37010907 %R 10.2196/42704 %U https://jopm.jmir.org/2023/1/e42704 %U https://doi.org/10.2196/42704 %U http://www.ncbi.nlm.nih.gov/pubmed/37010907 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e35601 %T Exploring Intergenerational Communication on Social Media Group Chats as a Cancer Prevention Intervention Opportunity Among Vietnamese American Families: Qualitative Study %A Duong,Huong Thien %A Hopfer,Suellen %+ Department of Health, Society, & Behavior, Program in Public Health, University of California, Irvine, 856 Health Sciences Quad, Irvine, CA, 92697-3957, United States, 1 949 824 5519, huongd@uci.edu %K cancer prevention %K Vietnamese %K family communication %K intervention %K colorectal cancer %K human papillomavirus vaccine %K HPV vaccine %K Papanicolaou test %K mobile phone %D 2023 %7 15.2.2023 %9 Original Paper %J JMIR Form Res %G English %X Background: Families use social media group chats to connect with each other about daily life and to share information. Although cancer is not a frequent topic of conversation in family settings, the adoption of mobile technology in the family context presents a novel opportunity to promote cancer prevention information. To the best of our knowledge, few studies have used private social media group chats to promote cancer prevention information to family members. Objective: In this formative study, we investigated how family group chat platforms can be leveraged to encourage colorectal cancer screening, human papillomavirus vaccination, and cervical cancer screening among intergenerational Vietnamese American families. This study aimed to cocreate a family-based communication intervention for introducing cancer screening information in family group chats. We sought to understand family members’ motivations for using group chats, family dynamics and conversation patterns, and group chat experiences and cultural norms for interacting with family members. Methods: Overall, 20 audio-recorded and semistructured interviews were conducted with young Vietnamese adults. The study was conducted between August and October 2018. Participants were Vietnamese Americans; aged between 18 and 44 years; living in Orange County, California; had an existing family group chat; and expressed an interest in becoming family health advocates. Data were analyzed using a framework analysis. Results: In total, 13 (65%) of the 20 young adults reported having >1 group chat with their immediate and extended family. Preventive health was not a typical topic of family conversations, but food, family announcements, personal updates, humorous videos or photos, and current events were. Young adults expressed openness to initiating conversations with family members about cancer prevention; however, they also raised concerns that may influence family members’ receptivity to the messages. Themes that could potentially impact family members’ willingness to accept cancer prevention messages included family status and hierarchy, gender dynamics, relational closeness in the family, and source trust and credibility. These considerations may impact whether families will be open to receiving cancer screening information and acting on it. The participants also mentioned practical considerations for intervention and message design, which included the Vietnamese cultural conversation etiquette of hỏi thăm, respect for a physician’s recommendation, prevention versus symptom orientation, the family health advocate’s bilingual capacity, and the busy lives of family members. In response to exemplar messages, participants mentioned that they preferred to personalize template messages to accommodate conversational norms in their family group chats. Conclusions: The findings of this study inform the development of a social media intervention for increasing preventive cancer screening in Vietnamese American families. %M 36790844 %R 10.2196/35601 %U https://formative.jmir.org/2023/1/e35601 %U https://doi.org/10.2196/35601 %U http://www.ncbi.nlm.nih.gov/pubmed/36790844 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 9 %N %P e42334 %T Telehealth Use Following COVID-19 Within Patient-Sharing Physician Networks at a Rural Comprehensive Cancer Center: Cross-sectional Analysis %A Yu,Liyang %A Liu,You-Chi %A Cornelius,Sarah L %A Scodari,Bruno T %A Brooks,Gabriel A %A O'Malley,Alistair James %A Onega,Tracy %A Moen,Erika L %+ Department of Biomedical Data Science, Geisel School of Medicine at Dartmouth College, 1 Medical Center Dr, Lebanon, NH, 03756, United States, 1 603 646 5722, Erika.L.Moen@dartmouth.edu %K telehealth %K rural cancer care %K patient-sharing networks %K network analysis %K COVID-19 %K cancer care %K telemedicine %K oncology %K oncologist %K electronic health record data %K health system %K patient network %D 2023 %7 17.1.2023 %9 Original Paper %J JMIR Cancer %G English %X Background: In response to the COVID-19 pandemic, cancer centers rapidly adopted telehealth to deliver care remotely. Telehealth will likely remain a model of care for years to come and may not only affect the way oncologists deliver care to their own patients but also the physicians with whom they share patients. Objective: This study aimed to examine oncologist characteristics associated with telehealth use and compare patient-sharing networks before and after the COVID-19 pandemic in a rural catchment area with a particular focus on the ties between physicians at the comprehensive cancer center and regional facilities. Methods: In this retrospective observational study, we obtained deidentified electronic health record data for individuals diagnosed with breast, colorectal, or lung cancer at Dartmouth Health in New Hampshire from 2018-2020. Hierarchical logistic regression was used to identify physician factors associated with telehealth encounters post COVID-19. Patient-sharing networks for each cancer type before and post COVID-19 were characterized with global network measures. Exponential-family random graph models were performed to estimate homophily terms for the likelihood of ties existing between physicians colocated at the hub comprehensive cancer center. Results: Of the 12,559 encounters between patients and oncologists post COVID-19, 1228 (9.8%) were via telehealth. Patient encounters with breast oncologists who practiced at the hub hospital were over twice as likely to occur via telehealth compared to encounters with oncologists who practiced in regional facilities (odds ratio 2.2, 95% CI 1.17-4.15; P=.01). Patient encounters with oncologists who practiced in multiple locations were less likely to occur via telehealth, and this association was statistically significant for lung cancer care (odds ratio 0.26, 95% CI 0.09-0.76; P=.01). We observed an increase in ties between oncologists at the hub hospital and oncologists at regional facilities in the lung cancer network post COVID-19 compared to before COVID-19 (93/318, 29.3%, vs 79/370, 21.6%, respectively), which was also reflected in the lower homophily coefficients post COVID-19 compared to before COVID-19 for physicians being colocated at the hub hospital (estimate: 1.92, 95% CI 1.46-2.51, vs 2.45, 95% CI 1.98-3.02). There were no significant differences observed in breast cancer or colorectal cancer networks. Conclusions: Telehealth use and associated changes to patient-sharing patterns associated with telehealth varied by cancer type, suggesting disparate approaches for integrating telehealth across clinical groups within this health system. The limited changes to the patient-sharing patterns between oncologists at the hub hospital and regional facilities suggest that telehealth was less likely to create new referral patterns between these types of facilities and rather replace care that would otherwise have been delivered in person. However, this study was limited to the 2 years immediately following the initial outbreak of COVID-19, and longer-term follow-up may uncover delayed effects that were not observed in this study period. %M 36595737 %R 10.2196/42334 %U https://cancer.jmir.org/2023/1/e42334 %U https://doi.org/10.2196/42334 %U http://www.ncbi.nlm.nih.gov/pubmed/36595737 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e41354 %T Adaptation of a Personalized Electronic Care Planning Tool for Cancer Follow-up Care: Formative Study %A Sohl,Stephanie J %A Duncan,Pamela W %A Thakur,Elyse %A Puccinelli-Ortega,Nicole %A Salsman,John M %A Russell,Greg %A Pasche,Boris C %A Wentworth,Stacy %A Miller Jr,David P %A Wagner,Lynne I %A Topaloglu,Umit %+ Wake Forest University School of Medicine, Medical Center Blvd., Winston-Salem, NC, 27157, United States, 1 3367135093, ssohl@wakehealth.edu %K cancer survivorship %K cancer survivor %K colorectal cancer %K patient engagement %K shared decision-making %K follow-up care %K patient care planning %K electronic tool %K patient-reported outcomes %K behavior change %D 2023 %7 10.1.2023 %9 Original Paper %J JMIR Form Res %G English %X Background: Most patients diagnosed with colorectal cancer will survive for at least 5 years; thus, engaging patients to optimize their health will likely improve outcomes. Clinical guidelines recommend patients receive a comprehensive care plan (CP) when transitioning from active treatment to survivorship, which includes support for ongoing symptoms and recommended healthy behaviors. Yet, cancer care providers find this guideline difficult to implement. Future directions for survivorship care planning include enhancing information technology support for developing personalized CPs, using CPs to facilitate self-management, and assessing CPs in clinical settings. Objective: We aimed to develop an electronic tool for colorectal cancer follow-up care (CFC) planning. Methods: Incorporating inputs from health care professionals and patient stakeholders is fundamental to the successful integration of any tool into the clinical workflow. Thus, we followed the Integrate, Design, Assess, and Share (IDEAS) framework to adapt an existing application for stroke care planning (COMPASS-CP) to meet the needs of colorectal cancer survivors (COMPASS-CP CFC). Constructs from the Consolidated Framework for Implementation Research (CFIR) guided our approach. We completed this work in 3 phases: (1) gathering qualitative feedback from stakeholders about the follow-up CP generation design and workflow; (2) adapting algorithms and resource data sources needed to generate a follow-up CP; and (3) optimizing the usability of the adapted prototype of COMPASS-CP CFC. We also quantitatively measured usability (target average score ≥70; range 0-100), acceptability, appropriateness, and feasibility. Results: In the first phase, health care professionals (n=7), and patients and caregivers (n=7) provided qualitative feedback on COMPASS-CP CFC that informed design elements such as selection, interpretation, and clinical usefulness of patient-reported measures. In phase 2, we built a minimal viable product of COMPASS-CP CFC. This tool generated CPs based on the needs identified by patient-completed measures (including validated patient-reported outcomes) and electronic health record data, which were then matched with resources by zip code and preference to support patients’ self-management. Elements of the CFIR assessed revealed that most health care professionals believed the tool would serve patients’ needs and had advantages. In phase 3, the average System Usability Scale score was above our target score for health care professionals (n=5; mean 71.0, SD 15.2) and patients (n=5; mean 95.5, SD 2.1). Participants also reported high levels of acceptability, appropriateness, and feasibility. Additional CFIR-informed feedback, such as desired format for training, will inform future studies. Conclusions: The data collected in this study support the initial usability of COMPASS-CP CFC and will inform the next steps for implementation in clinical care. COMPASS-CP CFC has the potential to streamline the implementation of personalized CFC planning to enable systematic access to resources that will support self-management. Future research is needed to test the impact of COMPASS-CP CFC on patient health outcomes. %M 36626203 %R 10.2196/41354 %U https://formative.jmir.org/2023/1/e41354 %U https://doi.org/10.2196/41354 %U http://www.ncbi.nlm.nih.gov/pubmed/36626203 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 8 %N 4 %P e39725 %T Role for a Web-Based Intervention to Alleviate Distress in People With Newly Diagnosed Testicular Cancer: Mixed Methods Study %A Conduit,Ciara %A Guo,Christina %A Smith,Allan B %A Rincones,Orlando %A Baenziger,Olivia %A Thomas,Benjamin %A Goad,Jeremy %A Lenaghan,Dan %A Lawrentschuk,Nathan %A Wong,Lih-Ming %A Corcoran,Niall M %A Ross,Margaret %A Gibbs,Peter %A O'Haire,Sophie %A Anton,Angelyn %A Liow,Elizabeth %A Lewin,Jeremy %A Tran,Ben %+ Personalised Oncology, Walter and Eliza Hall Institute of Medical Research, 1G Royal Parade, Parkville, 3052, Australia, 61 393452555, ben.tran@petermac.org %K testicular germ cell tumor %K cancer survivors %K emotional distress %K anxiety disorders %K depression %D 2022 %7 28.10.2022 %9 Original Paper %J JMIR Cancer %G English %X Background: Distress is common immediately after diagnosis of testicular cancer. It has historically been difficult to engage people in care models to alleviate distress because of complex factors, including differential coping strategies and influences of social gender norms. Existing support specifically focuses on long-term survivors of testicular cancer, leaving an unmet need for age-appropriate and sex-sensitized support for individuals with distress shortly after diagnosis. Objective: We evaluated a web-based intervention, Nuts & Bolts, designed to provide support and alleviate distress after diagnosis of testicular cancer. Methods: Using a mixed methods design to evaluate the acceptability, feasibility, and impact of Nuts & Bolts on distress, we randomly assigned participants with recently diagnosed testicular cancer (1:1) access to Nuts & Bolts at the time of consent (early) or alternatively, 1 week later (day 8; delayed). Participants completed serial questionnaires across a 4- to 5-week period to evaluate levels of distress (measured by the National Comprehensive Cancer Network Distress Thermometer [DT]; scored 0-10), anxiety, and depression (Hospital Anxiety and Depression Score [HADS]–Anxiety and HADS-Depression; each scored 0-21). The primary end point was change in distress between consent and day 8. Secondary end points of distress, anxiety, and depression were assessed at defined intervals during follow-up. Optional, semistructured interviews occurring after completion of quantitative assessments were thematically analyzed. Results: Overall, 39 participants were enrolled in this study. The median time from orchidectomy to study consent was 14.8 (range 3-62) days. Moderate or high levels of distress evaluated using DT were reported in 58% (23/39) of participants at consent and reduced to 13% (5/38) after 1 week of observation. Early intervention with Nuts & Bolts did not significantly decrease the mean DT score by day 8 compared with delayed intervention (early: 4.56-2.74 vs delayed: 4.47-2.74; P=.85), who did not yet have access to the website. A higher baseline DT score was significantly predictive of reduction in DT score during this period (P<.001). Median DT, HADS-Anxiety, and HADS-Depression scores reduced between orchidectomy and 3 weeks postoperatively and then remained stable throughout the observation period. Thematic analysis of 16 semistructured interviews revealed 4 key themes, “Nuts & Bolts is a helpful tool,” “Maximizing benefits of the website,” “Whirlwind of diagnosis and readiness for treatment,” and “Primary stressors and worries,” as well as multiple subthemes. Conclusions: Distress is common following the diagnosis of testicular cancer; however, it decreases over time. Nuts & Bolts was considered useful, acceptable, and relevant by individuals diagnosed with testicular cancer, with strong support for the intervention rendered by thematic analyses of semistructured interviews. The best time to introduce support, such as Nuts & Bolts, is yet to be determined; however, it may be most beneficial as soon as testicular cancer is strongly suspected or diagnosed. %M 36306156 %R 10.2196/39725 %U https://cancer.jmir.org/2022/4/e39725 %U https://doi.org/10.2196/39725 %U http://www.ncbi.nlm.nih.gov/pubmed/36306156 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 8 %N 4 %P e32153 %T A Web-Based Prostate Cancer–Specific Holistic Needs Assessment (CHAT-P): Multimethod Study From Concept to Clinical Practice %A Nanton,Veronica %A Appleton,Rebecca %A Ahmed,Nisar %A Loew,Joelle %A Roscoe,Julia %A Muthuswamy,Radha %A Patel,Prashant %A Dale,Jeremy %A Ahmedzai,Sam H %+ Warwick Medical School, University of Warwick, Gibbet Hill Road, Coventry, United Kingdom, 44 2476 574025, v.nanton@warwick.ac.uk %K Holistic Needs Assessment %K prostate cancer %K survivorship %K cancer follow-up %K coproduction %K web-based communication %K care planning %D 2022 %7 19.10.2022 %9 Original Paper %J JMIR Cancer %G English %X Background: Men with prostate cancer experience immediate and long-term consequences of the disease and its treatment. They require both long-term monitoring for recurrence or progression and follow-up to identify and help manage psychosocial and physical impacts. Holistic Needs Assessment aims to ensure patient-centered continuing cancer care. However, paper-based generic tools have had limited uptake within cancer services, and there is little evidence of their impact. With the expansion of remote methods of care delivery and to enhance the value of generic tools, we developed a web-based Composite Holistic Needs Assessment Adaptive Tool-Prostate (CHAT-P) specifically for prostate cancer. Objective: This paper described the context, conceptual underpinning, and approach to design that informed the development of CHAT-P, starting from the initial concept to readiness for deployment. Through this narrative, we sought to contribute to the expanding body of knowledge regarding the coproduction process of innovative digital systems with potential for enhanced cancer care delivery. Methods: The development of CHAT-P was guided by the principles of coproduction. Men with prostate cancer and health care professionals contributed to each stage of the process. Testing was conducted iteratively over a 5-year period. An initial rapid review of patient-reported outcome measures identified candidate items for inclusion. These items were categorized and allocated to overarching domains. After the first round of user testing, further items were added, improvements were made to the adaptive branching system, and response categories were refined. A functioning version of CHAT-P was tested with 16 patients recruited from 3 outpatient clinics, with interviewers adopting the think-aloud technique. Interview transcripts were analyzed using a framework approach. Interviews and informal discussions with health care professionals informed the development of a linked care plan and clinician-facing platform, which were incorporated into a separate feasibility study of digitally enhanced integrated cancer care. Results: The findings from the interview study demonstrated the usability, acceptability, and potential value of CHAT-P. Men recognized the benefits of a personalized approach and the importance of a holistic understanding of their needs. Preparation for the consultation by the completion of CHAT-P was also recognized as empowering. The possible limitations identified were related to the importance of care teams responding to the issues selected in the assessment. The subsequent feasibility study highlighted the need for attention to men’s psychological concerns and demonstrated the ability of CHAT-P to capture red flag symptoms requiring urgent investigation. Conclusions: CHAT-P offers an innovative means by which men can communicate their concerns to their health care teams before a physical or remote consultation. There is now a need for a full evaluation of the implementation process and outcomes where CHAT-P is introduced into the clinical pathway. There is also scope for adapting the CHAT-P model to other cancers. %M 36260380 %R 10.2196/32153 %U https://cancer.jmir.org/2022/4/e32153 %U https://doi.org/10.2196/32153 %U http://www.ncbi.nlm.nih.gov/pubmed/36260380 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 9 %N 3 %P e37606 %T Developing a Provincial Surveillance and Support System for Childhood Cancer Survivors: Multiphase User-Centered Design Study %A Shuldiner,Jennifer %A Shah,Nida %A Reis,Catherine %A Chalmers,Ian %A Ivers,Noah %A Nathan,Paul %+ Institute for Health System Solutions and Virtual Care, Women's College Hospital, 76 Grenville St, Toronto, ON, M5S 1B2, Canada, 1 (416) 323 6400, jennifer.shuldiner@wchospital.ca %K design %K cancer screening %K childhood cancer survivor %K late effects %K surveillance %K cancer %K cancer survivor %K morbidity %K mortality %K cancer treatment %K mammogram %K echocardiogram %D 2022 %7 13.9.2022 %9 Original Paper %J JMIR Hum Factors %G English %X Background: Survivors of childhood cancer are at lifelong risk of morbidity (such as new cancers or heart failure) and premature mortality due to their cancer treatment. These are termed late effects. Therefore, they require lifelong, risk-tailored surveillance. However, most adult survivors of childhood cancer do not complete recommended surveillance tests such as mammograms or echocardiograms. Objective: In partnership with survivors, family physicians, and health system partners, we are designing a provincial support system for high-priority tests informed by principles of implementation science, behavioral science, and design thinking. Methods: Our multiphase process was structured as follows. Step 1 consisted of a qualitative study to explore intervention components essential to accessing surveillance tests. Step 2 comprised a workshop with childhood cancer survivors, family physicians, and health system stakeholders that used the Step 1 findings and “personas” (a series of fictional but data-informed characters) to develop and tailor the intervention for different survivor groups. Step 3 consisted of intervention prototype development, and Step 4 involved iterative user testing. Results: The qualitative study of 30 survivors and 7 family physicians found a high desire for information on surveillance for late effects. Respondents indicated that the intervention should help patients book appointments when they are due in addition to providing personalized information. Insights from the workshop included the importance of partnering with both family physicians and survivorship clinics and providing emotional support for survivors who may experience distress upon learning of their risk for late effects. In our user-testing process, prototypes went through iterations that incorporated feedback from users regarding acceptability, usability, and functionality. We sought to address the needs of survivors and physicians while balancing the capacity and infrastructure available for a lifelong intervention via our health system partners. Conclusions: In partnership with childhood cancer survivors, family physicians, and health system partners, we elucidated the barriers and enablers to accessing guideline-recommended surveillance tests and designed a multifaceted solution that will support survivors and their family physicians. The next step is to evaluate the intervention in a pragmatic randomized controlled trial. %M 36099013 %R 10.2196/37606 %U https://humanfactors.jmir.org/2022/3/e37606 %U https://doi.org/10.2196/37606 %U http://www.ncbi.nlm.nih.gov/pubmed/36099013 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 11 %N 9 %P e35093 %T A Family-Centered Sexual Health Intervention to Promote Cervical Cancer Screening Uptake Among Low-Income Rural Women in India: Protocol for a Community-Based Mixed Methods Pilot Study %A Vahabi,Mandana %A Lofters,Aisha K %A Mishra,Gauravi %A Pimple,Sharmila %A Wong,Josephine Pui-Hing %+ Daphne Cockwell School of Nursing, Toronto Metropolitan University (formerly known as Ryerson University), 350 Victoria Street, Toronto, ON, M5B 2K3, Canada, 1 416 979 5000 ext 552725, mvahabi@ryerson.ca %K cervical cancer screening %K human papillomavirus self-sampling %K India %K low income %K sexual health %K health literacy %K women %K family-centered care %K rural area %K rural %K sexual health literacy %K human papillomavirus %K screening %K cancer screening %K cervical %K cancer %K sexually transmitted infection %D 2022 %7 8.9.2022 %9 Protocol %J JMIR Res Protoc %G English %X Background: Human papillomavirus (HPV) is the primary cause of cervical cancer, which is preventable through screening and early treatment. The Papanicolaou (Pap) test and visual inspection with acetic acid (VIA), which are traditionally performed in clinical settings, have been used effectively to screen for cervical cancer and precancerous changes and reduce cervical cancer mortality in high-income countries for many decades. However, these screening methods are not easily accessible to women living in low- and middle-income countries, especially women living in rural areas. Objective: The project will use HPV self-sampling, which will be supported by a sexual health literacy intervention, to increase rural women’s participation in cervical cancer screening. The objectives are to determine the effectiveness of this program in (1) increasing sexual health literacy, (2) reducing the gendered stigma of HPV and cervical cancer, and (3) promoting cervical cancer screening by using HPV self-sampling. Methods: The pilot study will use a community-based, family-centered, mixed methods design. We will recruit 120 women aged 30 to 69 years who are underscreened or were never screened for cervical cancer, along with 120 supportive male relatives or friends from 3 low-income rural/tribal villages in Maharashtra, India. Participants will attend gender-specific sexual health education sessions, followed by a movie matinee. Data will be collected through an interviewer-administered questionnaire before and after sexual health education sessions. The questionnaire will include items on social demographics, medical histories, attitudes, sexual health stigma, cervical cancer knowledge, and screening practices. Women will self-select whether to use HPV self-sampling. Those who do not may undergo a Pap test or VIA. Participants’ views regarding barriers and facilitators and their suggestions for improving access and uptake will also be elicited. This protocol was approved by the research ethics boards of Toronto Metropolitan University (formerly known as Ryerson University; reference number: REB 2020-104) and Tata Memorial Center (reference number: OIEC/3786/2021 /00003). Results: The Preventing Cervical Cancer in India Through Self-Sampling study was funded in January 2020 for 15 months. Due to the COVID-19 pandemic, the project was extended by 1 year. The study outcome measures will include changes in knowledge and attitudes about cervical cancer screening, the proportion of participants who self-select into each cohort, the proportion of positive test results in each cohort, and the proportion of participants with confirmed cervical cancer. Women’s experiences regarding barriers and facilitators of screening uptake will be captured. Conclusions: Our multifaceted work could lead to reduced cervical cancer mortality and morbidity and increased community capacity in sexual health promotion and cervical cancer prevention. The insights and lessons learned from our project can be used to inform the adaptation and scale-up of HPV self-sampling among women across India and in other countries; promote collective commitment to family-centered wellness; and support women to make healthful, personalized cervical screening decisions. International Registered Report Identifier (IRRID): PRR1-10.2196/35093 %M 36074549 %R 10.2196/35093 %U https://www.researchprotocols.org/2022/9/e35093 %U https://doi.org/10.2196/35093 %U http://www.ncbi.nlm.nih.gov/pubmed/36074549 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 8 %N 3 %P e34745 %T Association Between Patient Portal Use and Perceived Patient-Centered Communication Among Adults With Cancer: Cross-sectional Survey Study %A Zaidi,Maryum %A Amante,Daniel J %A Anderson,Ekaterina %A Ito Fukunaga,Mayuko %A Faro,Jamie M %A Frisard,Christine %A Sadasivam,Rajani S %A Lemon,Stephenie C %+ Division of Preventive and Behavioral Medicine, Department of Population and Quantitative Health Sciences, UMass Chan Medical School, 368 Plantation Street, Worcester, MA, 01655, United States, 1 774 455 4873, maryum.zaidi@umassmed.edu %K health information technology %K informatics %K cancer care %K patient-centered communication %K patient portal %K patient communication %K cancer %K oncology %K health information %K information seeking %K patient-centered care %K patient perception %D 2022 %7 9.8.2022 %9 Original Paper %J JMIR Cancer %G English %X Background: Patient-centered communication (PCC) plays a vital role in effective cancer management and care. Patient portals are increasingly available to patients and hold potential as a valuable tool to facilitate PCC. However, whether more frequent use of patient portals is associated with increased perceived PCC and which mechanisms might mediate this relationship have not been fully studied. Objective: The goal of this study was to investigate the association between the frequency of access of patient portals and perceived PCC in patients diagnosed with cancer. We further sought to examine whether this association was mediated by patients’ self-efficacy in health information–seeking. Methods: We used data from the Health Information National Trend Survey 5 (HINTS 5) cycle 3 (2019) and cycle 4 (2020). This analysis includes 1222 individuals who self-reported having a current or past diagnosis of cancer. Perceived PCC was measured with a 7-item HINTS 5–derived scale and classified as low, medium, or high. Patient portal use was measured by a single item assessing the frequency of use. Self-efficacy about health information–seeking was assessed with a 1-item measure assessing confidence in obtaining health information. We used adjusted multinomial logistic regression models to estimate relative risk ratios (RRRs)/effect sizes of the association between patient portal use and perceived PCC. Mediation by health information self-efficacy was investigated using the Baron and Kenny and Karlson-Holm-Breen methods. Results: A total of 54.5% of the sample reported that they had not accessed their patient portals in the past 12 months, 12.6% accessed it 1 to 2 times, 24.8% accessed it 3 to 9 times, and 8.2% accessed it 10 or more times. Overall, the frequency of accessing the patient portal was marginally associated (P=.06) with perceived PCC in an adjusted multinominal logistic regression model. Patients who accessed their patient portal 10 or more times in the previous 12 months were almost 4 times more likely (RRR 3.8, 95% CI 1.6-9.0) to report high perceived PCC. In mediation analysis, the association between patient portal use and perceived PCC was attenuated adjusting for health information–seeking self-efficacy, but those with the most frequent patient portal use (10 or more times in the previous 12 months) were still almost 2.5 times more likely to report high perceived PCC (RRR 2.4, 95% CI 1.1-5.6) compared to those with no portal use. Conclusions: Increased frequency of patient portal use was associated with higher PCC, and an individual’s health information–seeking self-efficacy partially mediated this association. These findings emphasize the importance of encouraging patients and providers to use patient portals to assist in patient-centeredness of cancer care. Interventions to promote the adoption and use of patient portals could incorporate strategies to improve health information self-efficacy. %M 35943789 %R 10.2196/34745 %U https://cancer.jmir.org/2022/3/e34745 %U https://doi.org/10.2196/34745 %U http://www.ncbi.nlm.nih.gov/pubmed/35943789 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 11 %N 6 %P e38917 %T Ensuring a Successful Transition From Cytology to Human Papillomavirus–Based Primary Cervical Cancer Screening in Canada by Investigating the Psychosocial Correlates of Women’s Intentions: Protocol for an Observational Study %A Griffin-Mathieu,Gabrielle %A Haward,Ben %A Tatar,Ovidiu %A Zhu,Patricia %A Perez,Samara %A Shapiro,Gilla K %A McBride,Emily %A Thompson,Erika L %A Smith,Laurie W %A Lofters,Aisha K %A Daley,Ellen M %A Guichon,Juliet R %A Waller,Jo %A Steben,Marc %A Decker,Kathleen M %A Mayrand,Marie-Helene %A Brotherton,Julia M L %A Ogilvie,Gina S %A Zimet,Gregory D %A Norris,Teresa %A Rosberger,Zeev %+ Lady Davis Institute for Medical Research, McGill University, Jewish General Hospital, 3755 Chemin de la Côte-Sainte-Catherine, Montreal, QC, H3T 1E2, Canada, 1 514 340 8222 ext 23978, gabrielle.griffin-mathieu@mail.mcgill.ca %K human papillomavirus %K HPV-based primary screening %K cervical cancer %K cervical cancer screening %K cancer prevention %K knowledge %K attitudes and beliefs %K preferences %K HPV test acceptability %K HPV self-sampling %K Pap testing %K cytology %K mobile phone %D 2022 %7 16.6.2022 %9 Protocol %J JMIR Res Protoc %G English %X Background: The human papillomavirus (HPV) test has emerged as a significant improvement over cytology for primary cervical cancer screening. In Canada, provinces and territories are moving toward implementing HPV testing in cervical cancer screening programs. Although an abundance of research exists on the benefits of HPV-based screening, there is a dearth of research examining women’s understanding of HPV testing. In other countries, failure to adequately address women’s concerns about changes has disrupted the implementation of HPV-based screening. Objective: The aims of the multipart study described in this paper are to develop psychometrically valid measures of cervical cancer screening–related knowledge, attitudes, and beliefs; to examine the feasibility of a questionnaire examining psychosocial factors related to HPV-based screening; and to investigate psychosocial correlates of women’s intentions to participate in HPV-based screening. Methods: We conducted a web-based survey (study 1) of Canadian women to assess the acceptability and feasibility of a questionnaire, including the validation of scales examining cervical cancer knowledge, HPV testing knowledge, HPV testing attitudes and beliefs, and HPV test self-sampling attitudes and beliefs. Preferences for cervical cancer screening were assessed using the best-worst scaling methodology. A second web-based survey (study 2) will be administered to a national sample of Canadian women between June 2022 and July 2022 using the validated scales. Differences in the knowledge, attitudes, beliefs, and preferences of women who are currently either underscreened or adequately screened for cervical cancer will be examined through bivariate analyses. Multinomial logistic regression will be used to estimate the associations between psychosocial and sociodemographic factors and intentions to undergo HPV-based screening. Results: Between October 2021 and November 2021, a total of 1230 participants completed the questionnaire in study 1, and 1027 (83.49%) responses were retained after data cleaning methods were applied. Feasibility was comparable with similar population-based surveys in terms of survey length, participant attrition, and the number of participants excluded after data cleaning. As of May 2022, analysis of study 1 is ongoing, and results are expected to be published in the summer of 2022. Data collection is expected to begin for study 2 in the summer of 2022. Results are expected to be published between late 2022 and early 2023. Conclusions: Findings will provide direction for Canadian public health authorities to align guidelines to address women’s concerns and optimize the acceptability and uptake of HPV-based primary screening. Validated scales can be used by other researchers to improve and standardize the measurement of psychosocial factors affecting HPV test acceptability. Study results will be disseminated through peer-reviewed journal articles; conference presentations; and direct communication with researchers, clinicians, policy makers, media, and specialty organizations. International Registered Report Identifier (IRRID): DERR1-10.2196/38917 %M 35708742 %R 10.2196/38917 %U https://www.researchprotocols.org/2022/6/e38917 %U https://doi.org/10.2196/38917 %U http://www.ncbi.nlm.nih.gov/pubmed/35708742 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 11 %N 4 %P e37009 %T Acceptability and Feasibility of a Return-to-Work Intervention for Posttreatment Breast Cancer Survivors: Protocol for a Co-design and Development Study %A Bilodeau,Karine %A Gouin,Marie-Michelle %A Lecours,Alexandra %A Lederer,Valérie %A Durand,Marie-José %A Kilpatrick,Kelley %A Lepage,David %A Ladouceur-Deslauriers,Lauriane %A Dorta,Tomas %+ Faculty of Nursing, University of Montreal, PO Box 6128, Station Centre-ville, Montreal, QC, H3C 3J7, Canada, 1 514 343 6111 ext 43254, karine.bilodeau.2@umontreal.ca %K co-design %K breast cancer %K intervention %K return-to-work %K primary care %K qualitative %D 2022 %7 22.4.2022 %9 Protocol %J JMIR Res Protoc %G English %X Background: The mortality rate from breast cancer has been declining for many years, and the population size of working-age survivors is steadily increasing. However, the recurrent side effects of cancer and its treatment can result in multiple disabilities and disruptions to day-to-day life, including work disruptions. Despite the existing knowledge of best practices regarding return to work (RTW) for breast cancer survivors, only a few interdisciplinary interventions have been developed to address the individualized needs and multiple challenges of breast cancer survivors, health care professionals, and employer and insurer representatives. Thus, it seems appropriate to develop RTW interventions collaboratively by using a co-design approach with these specific stakeholders. Objective: This paper presents a protocol for developing and testing an innovative, interdisciplinary pilot intervention based on a co-design approach to better support RTW and job retention after breast cancer treatment. Methods: First, a participatory research approach will be used to develop the intervention in a co-design workshop with 12 to 20 participants, including people affected by cancer, employer and insurer representatives, and health care professionals. Next, a pilot intervention will be tested in a primary care setting with 6 to 8 women affected by breast cancer. The acceptability and feasibility of the pilot intervention will be pretested through semistructured interviews with participants, health care professionals, and involved patient partners. The transcribed data will undergo an iterative content analysis. Results: The first phase of the project—the co-design workshop—was completed in June 2021. The pilot test of the intervention will begin in spring 2022. The results from the test will be available in late 2022. Conclusions: The project will offer novel data regarding the use of the co-design approach for the development of innovative, co-designed interventions. In addition, it will be possible to document the acceptability and feasibility of the pilot intervention with a primary care team. Depending on the results obtained, the intervention could be implemented on a larger scale. International Registered Report Identifier (IRRID): DERR1-10.2196/37009 %M 35451972 %R 10.2196/37009 %U https://www.researchprotocols.org/2022/4/e37009 %U https://doi.org/10.2196/37009 %U http://www.ncbi.nlm.nih.gov/pubmed/35451972 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 8 %N 2 %P e34903 %T A Cancer Exercise Toolkit Developed Using Co-Design: Mixed Methods Study %A Dennett,Amy M %A Tang,Clarice Y %A Chiu,April %A Osadnik,Christian %A Granger,Catherine L %A Taylor,Nicholas F %A Campbell,Kristin L %A Barton,Christian %+ Allied Health Clinical Research Office, Eastern Health, Level 2, 5 Arnold St, Box Hill, 3128, Australia, 61 41128861, a.dennett@latrobe.edu.au %K cancer %K website %K online learning %K professional development %K physiotherapy %K exercise %K cancer survivorship %K cancer survivor %K digital health %K online health %K online toolkit %D 2022 %7 21.4.2022 %9 Original Paper %J JMIR Cancer %G English %X Background: Access to exercise therapy for cancer survivors is poor. Professional development to support exercise professionals in delivering these interventions is needed. Few online resources exist for exercise professionals to address this issue. Objective: To develop and evaluate a freely available online toolkit to support exercise professionals working with cancer survivors. Methods: A 2-phase, experience-based co-design approach was used to develop and evaluate the online toolkit. The two phases were as follows: 1) needs identification and co-design of resources and platform and 2) pilot evaluation. Four co-design workshops were conducted, transcribed, and thematically analyzed to identify key elements for the toolkit. For the pilot evaluation, a customized survey (the Determinants of Implementation Behavior Questionnaire) was distributed to exercise professionals at baseline and 3 months after launch of the online toolkit to determine its usability, utility, and effectiveness in improving their knowledge, confidence, and behavior. Results were reported as the median and interquartile range and changes were calculated using non-parametric tests. Website analytics described site usage after the initial evaluation. Results: Twenty-five exercise professionals participated in co-designing 8 key elements of the online Cancer Exercise Toolkit: the homepage and pages for getting started, screening and safety, assessment, exercise prescription, education, locations, and resources. For the pilot evaluation, 277/320 respondents (87% of whom were physiotherapists) from 26 countries completed the survey at baseline, with 58 exercise professionals completing follow-up surveys at 3 months. Exercise professionals’ knowledge, skills, and confidence in delivering exercise therapy to cancer survivors increased 3 months after baseline (items 1, 6, and 8: median score 5, IQR 3 to 6) to follow-up (items 1 and 6: median score 6, IQR 5 to 6; item 8: median score 5, IQR 5 to 7; P<.001) on a 1 to 7 Likert scale. Most participants (35/44, 80%) agreed or strongly agreed they would recommend the toolkit to colleagues. In the 6 months following the pilot evaluation, the toolkit received an average of 866 views per month. Conclusions: The co-designed online Cancer Exercise Toolkit was a useful resource for exercise professionals that may increase their knowledge, skills, and confidence in providing exercise therapy to cancer survivors. %M 35451966 %R 10.2196/34903 %U https://cancer.jmir.org/2022/2/e34903 %U https://doi.org/10.2196/34903 %U http://www.ncbi.nlm.nih.gov/pubmed/35451966 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 11 %N 4 %P e35543 %T Effectiveness of Individual Feedback and Coaching on Shared Decision-making Consultations in Oncology Care: Protocol for a Randomized Clinical Trial %A van Veenendaal,Haske %A Peters,Loes J %A Ubbink,Dirk T %A Stubenrouch,Fabienne E %A Stiggelbout,Anne M %A Brand,Paul LP %A Vreugdenhil,Gerard %A Hilders,Carina GJM %+ Erasmus School of Health Policy and Management, Erasmus University Rotterdam, P.O. Box 1738, Rotterdam, 3000 DR, Netherlands, 31 651952029, haskevanveenendaal@gmail.com %K decision-making %K shared %K education %K professional %K feedback learning %K coaching %K medical consultation %K medical oncology %K palliative care %D 2022 %7 6.4.2022 %9 Protocol %J JMIR Res Protoc %G English %X Background: Shared decision-making (SDM) is particularly important in oncology as many treatments involve serious side effects, and treatment decisions involve a trade-off between benefits and risks. However, the implementation of SDM in oncology care is challenging, and clinicians state that it is difficult to apply SDM in their actual workplace. Training clinicians is known to be an effective means of improving SDM but is considered time consuming. Objective: This study aims to address the effectiveness of an individual SDM training program using the concept of deliberate practice. Methods: This multicenter, single-blinded randomized clinical trial will be performed at 12 Dutch hospitals. Clinicians involved in decisions with oncology patients will be invited to participate in the study and allocated to the control or intervention group. All clinicians will record 3 decision-making processes with 3 different oncology patients. Clinicians in the intervention group will receive the following SDM intervention: completing e-learning, reflecting on feedback reports, performing a self-assessment and defining 1 to 3 personal learning questions, and participating in face-to-face coaching. Clinicians in the control group will not receive the SDM intervention until the end of the study. The primary outcome will be the extent to which clinicians involve their patients in the decision-making process, as scored using the Observing Patient Involvement–5 instrument. As secondary outcomes, patients will rate their perceived involvement in decision-making, and the duration of the consultations will be registered. All participating clinicians and their patients will receive information about the study and complete an informed consent form beforehand. Results: This trial was retrospectively registered on August 03, 2021. Approval for the study was obtained from the ethical review board (medical research ethics committee Delft and Leiden, the Netherlands [N20.170]). Recruitment and data collection procedures are ongoing and are expected to be completed by July 2022; we plan to complete data analyses by December 2022. As of February 2022, a total of 12 hospitals have been recruited to participate in the study, and 30 clinicians have started the SDM training program. Conclusions: This theory-based and blended approach will increase our knowledge of effective and feasible training methods for clinicians in the field of SDM. The intervention will be tailored to the context of individual clinicians and will target the knowledge, attitude, and skills of clinicians. The patients will also be involved in the design and implementation of the study. Trial Registration: Netherlands Trial Registry NL9647; https://www.trialregister.nl/trial/9647 International Registered Report Identifier (IRRID): DERR1-10.2196/35543 %M 35383572 %R 10.2196/35543 %U https://www.researchprotocols.org/2022/4/e35543 %U https://doi.org/10.2196/35543 %U http://www.ncbi.nlm.nih.gov/pubmed/35383572 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 8 %N 1 %P e31388 %T Twitter Conversations About Pancreatic Cancer by Health Care Providers and the General Public: Thematic Analysis %A Grewal,Udhayvir Singh %A Gupta,Arjun %A Doggett,Jamie %A Lou,Emil %A Gusani,Niraj J %A Maitra,Anirban %A Beg,Muhammad Shaalan %A Ocean,Allyson J %+ Weill Cornell Medicine, New York Presbyterian Hospital, 525 E 68th St, New York, NY, 10065, United States, 1 646 962 6200, ajo9001@med.cornell.edu %K pancreatic cancer %K Twitter %K general public %K health care providers %K social media %K Creation Pinpoint %K thematic analysis %D 2022 %7 24.3.2022 %9 Original Paper %J JMIR Cancer %G English %X Background:  There is a growing interest in the pattern of consumption of health-related information on social media platforms. Objective: We evaluated the content of discussions around pancreatic cancer on Twitter to identify subtopics of greatest interest to health care providers and the general public.  Methods:  We used an online analytical tool (Creation Pinpoint) to quantify Twitter mentions (tweets and retweets) related to pancreatic cancer between January 2018 and December 2019. Keywords, hashtags, word combinations, and phrases were used to identify mentions. Health care provider profiles were identified using machine learning and then verified by a human analyst. Remaining user profiles were classified as belonging to the general public. Data from conversations were stratified qualitatively into 5 domains: (1) prevention, (2) survivorship, (3) treatment, (4) research, and (5) policy. We compared the themes of conversations initiated by health care providers and the general public and analyzed the impact of the Pancreatic Cancer Awareness Month and announcements by public figures of pancreatic cancer diagnoses on the overall volume of conversations.  Results:  Out of 1,258,028 mentions of pancreatic cancer, 313,668 unique mentions were classified into the 5 domains. We found that health care providers most commonly discussed pancreatic cancer research (10,640/27,031 mentions, 39.4%), while the general public most commonly discussed treatment (154,484/307,449 mentions, 50.2%). Health care providers were found to be more likely to initiate conversations related to research (odds ratio [OR] 1.75, 95% CI 1.70-1.79, P<.001) and prevention (OR 1.49, 95% CI 1.41-1.57, P<.001) whereas the general public took the lead in the domains of treatment (OR 1.63, 95% CI 1.58-1.69, P<.001) and survivorship (OR 1.17, 95% CI 1.13-1.21, P<.001). Pancreatic Cancer Awareness Month did not increase the number of mentions by health care providers in any of the 5 domains, but general public mentions increased temporarily in all domains except prevention and policy. Health care provider mentions did not increase with announcements by public figures of pancreatic cancer diagnoses. After Alex Trebek, host of the television show Jeopardy, received his diagnosis, general public mentions of survivorship increased, while Justice Ruth Bader Ginsburg’s diagnosis increased conversations on treatment.  Conclusions: Health care provider conversations on Twitter are not aligned with the general public. Pancreatic Cancer Awareness Month temporarily increased general public conversations about treatment, research, and survivorship, but not prevention or policy. Future studies are needed to understand how conversations on social media platforms can be leveraged to increase health care awareness among the general public. %M 35323123 %R 10.2196/31388 %U https://cancer.jmir.org/2022/1/e31388 %U https://doi.org/10.2196/31388 %U http://www.ncbi.nlm.nih.gov/pubmed/35323123 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 8 %N 1 %P e33355 %T The Extent of Engagement With Telehealth Approaches by Patients With Advanced Cancer: Systematic Review %A Goodman,William %A Bagnall,Anne-Marie %A Ashley,Laura %A Azizoddin,Desiree %A Muehlensiepen,Felix %A Blum,David %A Bennett,Michael I %A Allsop,Matthew %+ Leeds Institute of Health Sciences, University of Leeds, Worsley Building, Clarendon Way, Woodhouse, Leeds, LS2 9LU, United Kingdom, 44 1133434185, m.j.allsop@leeds.ac.uk %K systematic review %K advanced cancer %K engagement %K digital health %K telehealth %K mobile phone %D 2022 %7 17.2.2022 %9 Review %J JMIR Cancer %G English %X Background: Telehealth approaches are increasingly being used to support patients with advanced diseases, including cancer. Evidence suggests that telehealth is acceptable to most patients; however, the extent of and factors influencing patient engagement remain unclear. Objective: The aim of this review is to characterize the extent of engagement with telehealth interventions in patients with advanced, incurable cancer reported in the international literature. Methods: This systematic review was registered with PROSPERO (International Prospective Register of Systematic Reviews) and is reported in line with PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) 2020 guidelines. A comprehensive search of databases was undertaken for telehealth interventions (communication between a patient with advanced cancer and their health professional via telehealth technologies), including MEDLINE, Embase, CINAHL, PsycINFO, Cochrane Library, Sociological Abstracts, and Web of Science, from the inception of each electronic database up until December 31, 2020. A narrative synthesis was conducted to outline the design, population, and context of the studies. A conceptual framework of digital engagement comprising quantitative behavioral measures (frequency, amount, duration, and depth of use) framed the analysis of engagement with telehealth approaches. Frequency data were transformed to a percentage (actual patient engagement as a proportion of intended engagement), and the interventions were characterized by intensity (high, medium, and low intended engagement) and mode of delivery for standardized comparisons across studies. Results: Of the 19,676 identified papers, 40 (0.2%) papers covering 39 different studies were eligible for inclusion, dominated by US studies (22/39, 56%), with most being research studies (26/39, 67%). The most commonly reported measure of engagement was frequency (36/39, 92%), with substantial heterogeneity in the way in which it was measured. A standardized percentage of actual patient engagement was derived from 17 studies (17/39, 44%; n=1255), ranging from 51% to 100% with a weighted average of 75.4% (SD 15.8%). A directly proportional relationship was found between intervention intensity and actual patient engagement. Higher engagement occurred when a tablet, computer, or smartphone app was the mode of delivery. Conclusions: Understanding engagement for people with advanced cancer can guide the development of telehealth approaches from their design to monitoring as part of routine care. With increasing telehealth use, the development of meaningful and context- and condition-appropriate measures of telehealth engagement is needed to address the current heterogeneity in reporting while improving the understanding of optimal implementation of telehealth for oncology and palliative care. Trial Registration: PROSPERO (International Prospective Register of Systematic Reviews) CRD42018117232; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42018117232 %M 35175205 %R 10.2196/33355 %U https://cancer.jmir.org/2022/1/e33355 %U https://doi.org/10.2196/33355 %U http://www.ncbi.nlm.nih.gov/pubmed/35175205 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 8 %N 1 %P e32291 %T Cruciferous Vegetable Intervention to Reduce the Risk of Cancer Recurrence in Non–Muscle-Invasive Bladder Cancer Survivors: Development Using a Systematic Process %A Yeary,Karen H Kim %A Clark,Nikia %A Saad-Harfouche,Frances %A Erwin,Deborah %A Kuliszewski,Margaret Gates %A Li,Qiang %A McCann,Susan E %A Yu,Han %A Lincourt,Catherine %A Zoellner,Jamie %A Tang,Li %+ Cancer Prevention and Control, Roswell Park Comprehensive Cancer Center, Elm and Carlton Streets, Buffalo, NY, 14263, United States, 1 716 845 1300 ext 6231, karen.yeary@roswellpark.org %K non–muscle invasive bladder cancer survivors %K dietary intervention %K cruciferous vegetable %K cancer survivorship %K cancer recurrence %D 2022 %7 15.2.2022 %9 Original Paper %J JMIR Cancer %G English %X Background: Bladder cancer is one of the top 10 most common cancers in the United States. Most bladder cancers (70%-80%) are diagnosed at early stages as non–muscle-invasive bladder cancer (NMIBC), which can be removed surgically. However, 50% to 80% of NMIBC cases recur within 5 years, and 15% to 30% progress with poor survival. Current treatments are limited and expensive. A wealth of preclinical and epidemiological evidence suggests that dietary isothiocyanates in cruciferous vegetables (Cruciferae) could be a novel, noninvasive, and cost-effective strategy to control NMIBC recurrence and progression. Objective: The aim of this study is to develop a scalable dietary intervention that increases isothiocyanate exposure through Cruciferae intake in NMIBC survivors. Methods: We worked with a community advisory board (N=8) to identify relevant factors, evidence-based behavior change techniques, and behavioral theory constructs used to increase Cruciferae intake in NMIBC survivors; use the PEN-3 Model focused on incorporating cultural factors salient to the group’s shared experiences to review the intervention components (eg, the saliency of behavioral messages); administer the revised intervention to community partners for their feedback; and refine the intervention. Results: We developed a multicomponent intervention for NMIBC survivors consisting of a magazine, tracking book, live telephone call script, and interactive voice messages. Entitled POW-R Health: Power to Redefine Your Health, the intervention incorporated findings from our adaptation process to ensure saliency to NMIBC survivors. Conclusions: This is the first evidence-based, theoretically grounded dietary intervention developed to reduce bladder cancer recurrence in NMIBC survivors using a systematic process for community adaptation. This study provides a model for others who aim to develop behavioral, community-relevant interventions for cancer prevention and control with the overall goal of wide-scale implementation and dissemination. %M 35166681 %R 10.2196/32291 %U https://cancer.jmir.org/2022/1/e32291 %U https://doi.org/10.2196/32291 %U http://www.ncbi.nlm.nih.gov/pubmed/35166681 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 8 %N 1 %P e29289 %T Automated Clinical Practice Guideline Recommendations for Hereditary Cancer Risk Using Chatbots and Ontologies: System Description %A Ritchie,Jordon B %A Frey,Lewis J %A Lamy,Jean-Baptiste %A Bellcross,Cecelia %A Morrison,Heath %A Schiffman,Joshua D %A Welch,Brandon M %+ Department of Public Health Sciences, Medical University of South Carolina, 22 Westedge St, Ste 213, Charleston, SC, 29403, United States, 1 517 599 2123, ritchiej@musc.edu %K service-oriented architecture %K restful API %K hereditary cancer %K risk assessment %K clinical practice guidelines %K consumer health informatics %D 2022 %7 31.1.2022 %9 Original Paper %J JMIR Cancer %G English %X Background: Identifying patients at risk of hereditary cancer based on their family health history is a highly nuanced task. Frequently, patients at risk are not referred for genetic counseling as providers lack the time and training to collect and assess their family health history. Consequently, patients at risk do not receive genetic counseling and testing that they need to determine the preventive steps they should take to mitigate their risk. Objective: This study aims to automate clinical practice guideline recommendations for hereditary cancer risk based on patient family health history. Methods: We combined chatbots, web application programming interfaces, clinical practice guidelines, and ontologies into a web service–oriented system that can automate family health history collection and assessment. We used Owlready2 and Protégé to develop a lightweight, patient-centric clinical practice guideline domain ontology using hereditary cancer criteria from the American College of Medical Genetics and Genomics and the National Cancer Comprehensive Network. Results: The domain ontology has 758 classes, 20 object properties, 23 datatype properties, and 42 individuals and encompasses 44 cancers, 144 genes, and 113 clinical practice guideline criteria. So far, it has been used to assess >5000 family health history cases. We created 192 test cases to ensure concordance with clinical practice guidelines. The average test case completes in 4.5 (SD 1.9) seconds, the longest in 19.6 seconds, and the shortest in 2.9 seconds. Conclusions: Web service–enabled, chatbot-oriented family health history collection and ontology-driven clinical practice guideline criteria risk assessment is a simple and effective method for automating hereditary cancer risk screening. %M 35099392 %R 10.2196/29289 %U https://cancer.jmir.org/2022/1/e29289 %U https://doi.org/10.2196/29289 %U http://www.ncbi.nlm.nih.gov/pubmed/35099392 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 8 %N 1 %P e31255 %T The Use of Telemedicine in Cancer Clinical Trials: Connect-Patient-to-Doctor Prospective Study %A Meghiref,Yasmine %A Parnot,Charles %A Duverger,Claire %A Difoum,Françoise Lilly %A Gourden,Audrey %A Yssaad,Halima %A Leiterer,Caroline %A Bedekovic,Caroline %A Blanchard,Julien %A Nait Ammar,Houria %A Schernberg,Antoine %A Vanquaethem,Hélène %A Helissey,Carole %+ Bégin Military Teaching Hospital, 69 avenue de Paris, Saint-Mandé, France, 33 143985319, carole.helissey@gmail.com %K telemedicine %K clinical trial %K neoplasms %K patient-reported outcome measures %D 2022 %7 27.1.2022 %9 Original Paper %J JMIR Cancer %G English %X Background: Telemedicine is currently being adopted for the management of patients in routine care. However, its use remains limited in the context of clinical trials. Objective: This study aimed to demonstrate the feasibility of telemonitoring and patient-reported outcomes collection in the context of clinical trials. Methods: The patients who were included in an interventional oncology clinical trial were eligible. The patients were registered with a digital tool to respond to a patient-reported outcomes questionnaire (ePRO) based on CTCAE (The Common Terminology Criteria for Adverse Events, National Cancer Institute), version 5.0, personalized to their pathology and treatment. An algorithm evaluated the health status of the patient based on the reported adverse events, with a classification in 4 different states (correct, compromise, state to be monitored, or critical state). The main objective was to evaluate the feasibility of remote monitoring via a connected platform of patients included in a clinical trial. Results: From July 1, 2020, to March 31, 2021, 39 patients were included. The median age was 71 years (range 41-94); 74% (n=29) were male, and 59% (n=23) had metastatic disease. Out of the 969 ePRO questionnaires completed over the course of the study, 77.0% (n=746) were classified as “correct,” 10.9% (n=106) as “compromised,” and 12.1% (n=117) as “to be monitored” or “critical.” The median response time was 7 days (IQR 7-15.5), and 76% (25/33) of the patients were compliant. Out of the 35 patients who answered a satisfaction questionnaire, 95% (n=33) were satisfied or very satisfied with the tool, and 85% (n=30) were satisfied with their relationship with the health care team. There were 5 unscheduled hospitalizations during the study period. Conclusions: Remote monitoring in clinical trials is feasible, with a high level of patient participation and satisfaction. It benefits patients, but it also ensures the high quality of the trial through the early management of adverse events and better knowledge of the tolerance profile of experimental treatments. This e-technology will likely be deployed more widely in our clinical trials. %M 34921544 %R 10.2196/31255 %U https://cancer.jmir.org/2022/1/e31255 %U https://doi.org/10.2196/31255 %U http://www.ncbi.nlm.nih.gov/pubmed/34921544 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 11 %N 1 %P e26414 %T Helping Patients Communicate With Oncologists When Cancer Treatment Resistance Occurs to Develop, Test, and Implement a Patient Communication Aid: Sequential Collaborative Mixed Methods Study %A Brédart,Anne %A Rault,Aude %A Terrasson,Johanna %A Seigneur,Etienne %A De Koning,Leanne %A Hess,Elisabeth %A Savignoni,Alexia %A Cottu,Paul %A Pierga,Jean-Yves %A Piperno-Neumann,Sophie %A Rodrigues,Manuel %A Bouleuc,Carole %A Dolbeault,Sylvie %+ Psycho-Oncology Unit, Institut Curie, Paris Sciences et Lettres Research University, 26 rue d'Ulm 75248 Paris Cedex 05, Paris, 75248, France, 33 0144324033 ext 4350, anne.bredart@curie.fr %K cancer resistance %K physician-patient communication %K question prompt list %K patient participation %K collaborative research %K mixed methods %D 2022 %7 12.1.2022 %9 Protocol %J JMIR Res Protoc %G English %X Background: Most cancer-related deaths result from disseminated diseases that develop resistance to anticancer treatments. Inappropriate communication in this challenging situation may result in unmet patient information and support needs. Patient communication aids such as question prompt lists (QPLs) may help. Objective: This study aims to develop and pilot-test a specific QPL in the following two contrasting clinical contexts in France after cancer resistance has developed: triple-negative and luminal B metastatic breast cancer (MBC) and metastatic uveal melanoma (MUM). Methods: A sequential study design with a mixed methods collaborative approach will be applied. The first step aims to build a specific QPL. Step 1a will explore oncologist-patient communication issues from oncology professionals’ interviews (n=20 approximately). Step 1b will appraise information and support needs experienced by patients with MBC or MUM both quantitatively (n=80) and qualitatively (n=40 approximately). These data will be used to develop and pilot-test a QPL specific to patients with cancer experiencing initial or acquired resistance to treatment. We expect to obtain a core QPL that comprises questions and concerns commonly expressed by patients with resistant cancer and is complemented by specific issues for either MBC or MUM cancer sites. In step 1c, 2 focus groups of patients with any type of metastatic cancer (n=4) and health care professionals (n=4) will be conducted to revise the content of a preliminary QPL and elaborate an acceptable and feasible clinical implementation. In step 1d, the content of the QPL version 1 and implementation guidance will be validated using a Delphi process. Step 2 will pilot-test the QPL version 1 in real practice with patients with MBC or MUM (n=80). Clinical utility will be assessed by comparing responses to questionnaires administered in step 1b (QPL-naive historical control group) and step 2 (QPL intervention group). Results: This study received grants in March and December 2019 and was approved by the French national ethics committee in July 2019. As of October 2021, interviews with oncology professionals have been conducted and analyzed (N=26 to reach saturation), and 39 and 27 patients with MBC and MUM, respectively, have been recruited. Conclusions: A clinically and culturally tailored QPL is expected to facilitate patients’ participation in consultations, improve oncologists’ responses to patients’ information and support needs, and thus foster patients’ psychological adjustment to the diagnosis and follow-up of cancer resistance to treatment. Trial Registration: ClinicalTrials.gov NCT04118062; http://clinicaltrials.gov/ct2/show/NCT04118062 International Registered Report Identifier (IRRID): DERR1-10.2196/26414 %M 35019850 %R 10.2196/26414 %U https://www.researchprotocols.org/2022/1/e26414 %U https://doi.org/10.2196/26414 %U http://www.ncbi.nlm.nih.gov/pubmed/35019850 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 1 %P e25792 %T Integrating Quality of Life in the Care Pathway of Cancer Patients Undergoing Immunotherapy Treatment: Descriptive, Cross-sectional Survey of an Online Patient Community's Experiences and Expectations %A Wilczynski,Ophélie %A Boisbouvier,Anthony %A Radoszycki,Lise %A Cotté,François-Emery %A Gaudin,Anne-Françoise %A Lemasson,Hervé %+ Bristol-Myers Squibb France, 3 Rue Joseph Monier, Rueil-Malmaison, 92506, France, 33 1 58 83 60 00, Herve.Lemasson@bms.com %K cancer %K quality of life %K immunotherapy %K patient community %K patient satisfaction %D 2022 %7 11.1.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: New cancer treatments, such as immune checkpoint inhibitors (ICIs), can improve survival and health-related quality of life (HRQoL) in patients with cancer. Although long-term monitoring of HRQoL has been shown to improve survival, integration of HRQoL into everyday practice remains poorly documented. Objective: This study describes experiences and expectations of patients treated with ICIs regarding a discussion of HRQoL with health care professionals (HCPs) in cancer management. Methods: This cross-sectional study was conducted in an online patient community (Carenity) in France. Patients treated with ICIs for cancer, included between September 2018 and January 2019, completed a questionnaire to assess the involvement of HCP in a discussion of HRQoL and when and what was discussed. Results: Of 82 patients included (mean age: 56.9 years, 95% CI 54.2-59.6; 46 [56%] male; 34 [41%] with lung cancer), 62 (76%) reported discussing HRQoL at least once with HCPs, mainly general practitioners (54/82, 66%), oncologists (53/82, 65%), and hospital nurses (50/82, 61%). Around half (45/82, 55%) of the patients were satisfied with these discussions. Discussions with the oncologist were at the patient’s initiative (34/53, 64%). Discussions occurred primarily during follow-up visits (40/62, 65%), when adverse events occurred (30/62, 48%), and at treatment initiation (27/62, 32%). The most discussed dimensions were symptoms (48/62, 77%) and physical well-being (43/62, 69%). With respect to expectations, 54/82 (66%) patients considered oncologists as the most important HCPs for discussing HRQoL. These discussions were desirable throughout the care pathway, particularly at diagnosis (63/82, 77%) and when treatment was initiated (75/82, 92%) or changed (68/82, 83%). All HRQoL dimensions were considered important to discuss. Conclusions: With only around half of the patients satisfied with HRQoL discussions, impactful HRQoL integration in clinical practice is critical. According to patients, this integration should involve mainly oncologists and general practitioners, should happen at every step of the care pathway, and should be extended to dimensions that are currently rarely addressed. %M 35014969 %R 10.2196/25792 %U https://www.jmir.org/2022/1/e25792 %U https://doi.org/10.2196/25792 %U http://www.ncbi.nlm.nih.gov/pubmed/35014969 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 8 %N 1 %P e18083 %T A Smartphone Remote Monitoring App to Follow Up Colorectal Cancer Survivors: Requirement Analysis %A Ayyoubzadeh,Seyed Mohammad %A Shirkhoda,Mohammad %A R Niakan Kalhori,Sharareh %A Mohammadzadeh,Niloofar %A Zakerabasali,Somayyeh %+ Peter L. Reichertz Institute for Medical Informatics, Technical University Braunschweig and Hannover Medical School, Mühlenpfordtstraße 23, Braunschweig, 38106, Germany, 49 531 391 2125, sharareh.niakankalhori@plri.de %K eHealth %K app %K colorectal cancer %K survivors %K requirements analysis %K MoSCoW %D 2022 %7 5.1.2022 %9 Original Paper %J JMIR Cancer %G English %X Background: Colorectal cancer survivors face multiple challenges after discharge. eHealth may potentially support them by providing tools such as smartphone apps. They have lots of capabilities to exchange information and could be used for remote monitoring of these patients. Objective: In this study, we addressed the required features for apps designed to follow up colorectal cancer patients based on survivors’ and clinical experts’ views. Methods: A mixed methods study was conducted. Features of related apps were extracted through the literature; the features were categorized, and then, they were modified. A questionnaire was designed containing the features listed and prioritized based on the MoSCoW (Must have, Should have, Could have, Won’t have) technique and an open question for each category. The link to the questionnaire was shared among clinical experts in Iran. The answers were analyzed using the content validity ratio (CVR), and based on the value of this measure, the minimum feature set of a monitoring app to follow up patients with colorectal cancer was addressed. In addition, a telephone interview with colorectal cancer survivors was conducted to collect their viewpoints regarding a remote monitoring system for colorectal cancer cases. Results: The questionnaire contained 10 sections evaluating 9 categories of features. The questionnaire was completed by 18 experts. The minimum set of features in the app was identified as patient information registration, sign and symptom monitoring, education, reminders, and patient evaluation (0.42 < CVR < 0.85). Features including physical activity, personalized advice, and social network did not achieve the minimum score (–0.11 < CVR < 0.39). We interviewed 9 colorectal cancer survivors. Information registration, sign and symptom monitoring, education, and personalized advice were the features with high priority from the survivors’ perspectives. Scheduling, shopping, and financial support features were emphasized by survivors in the interview. Conclusions: The requirement set could be used to design an app for the targeted population or patients affected by other cancers. As the views from both survivors and clinical experts were considered in this study, the remote system may more adequately fulfill the need for follow-up of survivors. This eases the patients’ and health care providers’ communication and interaction. %M 34989685 %R 10.2196/18083 %U https://cancer.jmir.org/2022/1/e18083 %U https://doi.org/10.2196/18083 %U http://www.ncbi.nlm.nih.gov/pubmed/34989685 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 12 %P e28709 %T Development of a Credible Virtual Clinician Promoting Colorectal Cancer Screening via Telehealth Apps for and by Black Men: Qualitative Study %A Wilson-Howard,Danyell %A Vilaro,Melissa J %A Neil,Jordan M %A Cooks,Eric J %A Griffin,Lauren N %A Ashley,Taylor T %A Tavassoli,Fatemeh %A Zalake,Mohan S %A Lok,Benjamin C %A Odedina,Folakemi T %A Modave,Francois %A Carek,Peter J %A George,Thomas J %A Krieger,Janice L %+ Department of Natural Sciences, Bethune Cookman University, 640 Mary McLeod Blvd., Daytona, FL, 32114, United States, 1 3864812687, wilsonda@cookman.edu %K telehealth %K digital health %K eHealth %K colorectal cancer %K Black men %K virtual human %K technology %K cancer screening %K app %K cancer %K prevention %K development %D 2021 %7 24.12.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: Traditionally, promotion of colorectal cancer (CRC) screening among Black men was delivered by community health workers, patient navigators, and decision aids (printed text or video media) at clinics and in the community setting. A novel approach to increase CRC screening of Black men includes developing and utilizing a patient-centered, tailored message delivered via virtual human technology in the privacy of one’s home. Objective: The objective of this study was to incorporate the perceptions of Black men in the development of a virtual clinician (VC) designed to deliver precision messages promoting the fecal immunochemical test (FIT) kit for CRC screening among Black men in a future clinical trial. Methods: Focus groups of Black men were recruited to understand their perceptions of a Black male VC. Specifically, these men identified source characteristics that would enhance the credibility of the VC. The modality, agency, interactivity, and navigability (MAIN) model, which examines how interface features affect the user’s psychology through four affordances (modality, agency, interactivity, and navigability), was used to assess the presumed credibility of the VC and likability of the app from the focus group transcripts. Each affordance triggers heuristic cues that stimulate a positive or a negative perception of trustworthiness, believability, and understandability, thereby increasing source credibility. Results: In total, 25 Black men were recruited from the community and contributed to the development of 3 iterations of a Black male VC over an 18-month time span. Feedback from the men enhanced the visual appearance of the VC, including its movement, clothing, facial expressions, and environmental surroundings. Heuristics, including social presence, novelty, and authority, were all recognized by the final version of the VC, and creditably was established. The VC was named Agent Leveraging Empathy for eXams (ALEX) and referred to as “brother-doctor,” and participants stated “wanting to interact with ALEX over their regular doctor.” Conclusions: Involving Black men in the development of a digital health care intervention is critical. This population is burdened by cancer health disparities, and incorporating their perceptions in telehealth interventions will create awareness of the need to develop targeted messages for Black men. %M 34780346 %R 10.2196/28709 %U https://formative.jmir.org/2021/12/e28709 %U https://doi.org/10.2196/28709 %U http://www.ncbi.nlm.nih.gov/pubmed/34780346 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 7 %N 4 %P e22140 %T Technology-Based Interventions for Cancer Caregivers: Concept Analysis %A Su,Zhaohui %A Li,Xiaoshan %A McDonnell,Dean %A Fernandez,Andrea A %A Flores,Bertha E %A Wang,Jing %+ Florida State University College of Nursing, 98 Varsity Way, Suite 472B, Tallahassee, FL, 32306-4310, United States, 1 850 644 6844, jingwang@nursing.fsu.edu %K concept analysis %K caregivers %K cancer %K oncology %K technology-based interventions %K mobile phone %D 2021 %7 16.11.2021 %9 Original Paper %J JMIR Cancer %G English %X Background: Cancer is a taxing chronic disease that demands substantial care, most of which is shouldered by informal caregivers. As a result, cancer caregivers often have to manage considerable challenges that could result in severe physical and psychological health consequences. Technology-based interventions have the potential to address many, if not all, of the obstacles caregivers encounter while caring for patients with cancer. However, although the application of technology-based interventions is on the rise, the term is seldom defined in research or practice. Considering that the lack of conceptual clarity of the term could compromise the effectiveness of technology-based interventions for cancer caregivers, timely research is needed to bridge this gap. Objective: This study aims to clarify the meaning of technology-based interventions in the context of cancer caregiving and provide a definition that can be used by cancer caregivers, patients, clinicians, and researchers to facilitate evidence-based research and practice. Methods: The 8-step concept analysis method by Walker and Avant was used to analyze the concept of technology-based interventions in the context of cancer caregiving. PubMed, PsycINFO, CINAHL, and Scopus were searched for studies that examined technology-based interventions for cancer caregivers. Results: The defining attributes of technology-based interventions were recognized as being accessible, affordable, convenient, and user-friendly. On the basis of insights gained on the defining attributes, antecedents to, and consequences of technology-based interventions through the concept analysis process, technology-based interventions were defined as the use of technology to design, develop, and deliver health promotion contents and strategies aimed at inducing or improving positive physical or psychological health outcomes in cancer caregivers. Conclusions: This study clarified the meaning of technology-based interventions in the context of cancer caregiving and provided a clear definition that can be used by caregivers, patients, clinicians, and researchers to facilitate evidence-based oncology practice. A clear conceptualization of technology-based interventions lays foundations for better intervention design and research outcomes, which in turn have the potential to help health care professionals address the needs and preferences of cancer caregivers more cost-effectively. %M 34783664 %R 10.2196/22140 %U https://cancer.jmir.org/2021/4/e22140 %U https://doi.org/10.2196/22140 %U http://www.ncbi.nlm.nih.gov/pubmed/34783664 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 7 %N 4 %P e31616 %T Computer-Based Decision Tools for Shared Therapeutic Decision-making in Oncology: Systematic Review %A Yung,Alan %A Kay,Judy %A Beale,Philip %A Gibson,Kathryn A %A Shaw,Tim %+ Research in Implementation Science and eHealth, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW 2006, Australia, 61 433697881, ayun4081@uni.sydney.edu.au %K oncology %K cancer %K computer-based %K decision support %K decision-making %K system %K tool %K machine learning %K artificial intelligence %K uncertainty %K shared decision-making %D 2021 %7 26.10.2021 %9 Review %J JMIR Cancer %G English %X Background: Therapeutic decision-making in oncology is a complex process because physicians must consider many forms of medical data and protocols. Another challenge for physicians is to clearly communicate their decision-making process to patients to ensure informed consent. Computer-based decision tools have the potential to play a valuable role in supporting this process. Objective: This systematic review aims to investigate the extent to which computer-based decision tools have been successfully adopted in oncology consultations to improve patient-physician joint therapeutic decision-making. Methods: This review was conducted in accordance with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) 2020 checklist and guidelines. A literature search was conducted on February 4, 2021, across the Cochrane Database of Systematic Reviews (from 2005 to January 28, 2021), the Cochrane Central Register of Controlled Trials (December 2020), MEDLINE (from 1946 to February 4, 2021), Embase (from 1947 to February 4, 2021), Web of Science (from 1900 to 2021), Scopus (from 1969 to 2021), and PubMed (from 1991 to 2021). We used a snowball approach to identify additional studies by searching the reference lists of the studies included for full-text review. Additional supplementary searches of relevant journals and gray literature websites were conducted. The reviewers screened the articles eligible for review for quality and inclusion before data extraction. Results: There are relatively few studies looking at the use of computer-based decision tools in oncology consultations. Of the 4431 unique articles obtained from the searches, only 10 (0.22%) satisfied the selection criteria. From the 10 selected studies, 8 computer-based decision tools were identified. Of the 10 studies, 6 (60%) were conducted in the United States. Communication and information-sharing were improved between physicians and patients. However, physicians did not change their habits to take advantage of computer-assisted decision-making tools or the information they provide. On average, the use of these computer-based decision tools added approximately 5 minutes to the total length of consultations. In addition, some physicians felt that the technology increased patients’ anxiety. Conclusions: Of the 10 selected studies, 6 (60%) demonstrated positive outcomes, 1 (10%) showed negative results, and 3 (30%) were neutral. Adoption of computer-based decision tools during oncology consultations continues to be low. This review shows that information-sharing and communication between physicians and patients can be improved with the assistance of technology. However, the lack of integration with electronic health records is a barrier. This review provides key requirements for enhancing the chance of success of future computer-based decision tools. However, it does not show the effects of health care policies, regulations, or business administration on physicians’ propensity to adopt the technology. Nevertheless, it is important that future research address the influence of these higher-level factors as well. Trial Registration: PROSPERO International Prospective Register of Systematic Reviews CRD42021226087; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42021226087 %M 34544680 %R 10.2196/31616 %U https://cancer.jmir.org/2021/4/e31616 %U https://doi.org/10.2196/31616 %U http://www.ncbi.nlm.nih.gov/pubmed/34544680 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 7 %N 4 %P e25659 %T Exploring Cancer Survivor Needs and Preferences for Communicating Personalized Cancer Statistics From Registry Data: Qualitative Multimethod Study %A Vromans,Ruben D %A van Eenbergen,Mies C %A Geleijnse,Gijs %A Pauws,Steffen %A van de Poll-Franse,Lonneke V %A Krahmer,Emiel J %+ Department of Communication and Cognition, Tilburg University, Warandelaan 2, Tilburg, 5037LE, Netherlands, 31 134663584, r.d.vromans@uvt.nl %K breast cancer %K cancer statistics %K personalization %K prostate cancer %K risk communication %K cancer registry %K cancer %K patient needs and preferences %D 2021 %7 25.10.2021 %9 Original Paper %J JMIR Cancer %G English %X Background: Disclosure of cancer statistics (eg, survival or incidence rates) based on a representative group of patients can help increase cancer survivors’ understanding of their own diagnostic and prognostic situation, and care planning. More recently, there has been an increasing interest in the use of cancer registry data for disclosing and communicating personalized cancer statistics (tailored toward personal and clinical characteristics) to cancer survivors and relatives. Objective: The aim of this study was to explore breast cancer (BCa) and prostate cancer (PCa) survivor needs and preferences for disclosing (what) and presenting (how) personalized statistics from a large Dutch population-based data set, the Netherlands Cancer Registry (NCR). Methods: To elicit survivor needs and preferences for communicating personalized NCR statistics, we created different (non)interactive tools visualizing hypothetical scenarios and adopted a qualitative multimethod study design. We first conducted 2 focus groups (study 1; n=13) for collecting group data on BCa and PCa survivor needs and preferences, using noninteractive sketches of what a tool for communicating personalized statistics might look like. Based on these insights, we designed a revised interactive tool, which was used to further explore the needs and preferences of another group of cancer survivors during individual think-aloud observations and semistructured interviews (study 2; n=11). All sessions were audio-recorded, transcribed verbatim, analyzed using thematic (focus groups) and content analysis (think-aloud observations), and reported in compliance with qualitative research reporting criteria. Results: In both studies, cancer survivors expressed the need to receive personalized statistics from a representative source, with especially a need for survival and conditional survival rates (ie, survival rate for those who have already survived for a certain period). Personalized statistics adjusted toward personal and clinical factors were deemed more relevant and useful to know than generic or average-based statistics. Participants also needed support for correctly interpreting the personalized statistics and putting them into perspective, for instance by adding contextual or comparative information. Furthermore, while thinking aloud, participants experienced a mix of positive (sense of hope) and negative emotions (feelings of distress) while viewing the personalized survival data. Overall, participants preferred simplicity and conciseness, and the ability to tailor the type of visualization and amount of (detailed) statistical information. Conclusions: The majority of our sample of cancer survivors wanted to receive personalized statistics from the NCR. Given the variation in patient needs and preferences for presenting personalized statistics, designers of similar information tools may consider potential tailoring strategies on multiple levels, as well as effective ways for providing supporting information to make sure that the personalized statistics are properly understood. This is encouraging for cancer registries to address this unmet need, but also for those who are developing or implementing personalized data-driven information tools for patients and relatives. %M 34694237 %R 10.2196/25659 %U https://cancer.jmir.org/2021/4/e25659 %U https://doi.org/10.2196/25659 %U http://www.ncbi.nlm.nih.gov/pubmed/34694237 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 7 %N 4 %P e26226 %T Features That Middle-aged and Older Cancer Survivors Want in Web-Based Healthy Lifestyle Interventions: Qualitative Descriptive Study %A Ivankova,Nataliya V %A Rogers,Laura Q %A Herbey,Ivan I %A Martin,Michelle Y %A Pisu,Maria %A Pekmezi,Dorothy %A Thompson,Lieu %A Schoenberger-Godwin,Yu-Mei M %A Oster,Robert A %A Fontaine,Kevin %A Anderson,Jami L %A Kenzik,Kelly %A Farrell,David %A Demark-Wahnefried,Wendy %+ Department of Health Services Administration, University of Alabama at Birmingham, SHPB 569, 1720 2nd Avenue South, Birmingham, AL, 35294-1212, United States, 1 12059962422, nivankov@uab.edu %K cancer survivors %K diet %K physical activity %K lifestyle %K internet %K interventions %K qualitative %K eHealth %K mobile phone %D 2021 %7 6.10.2021 %9 Original Paper %J JMIR Cancer %G English %X Background: With the increasing number of older cancer survivors, it is imperative to optimize the reach of interventions that promote healthy lifestyles. Web-based delivery holds promise for increasing the reach of such interventions with the rapid increase in internet use among older adults. However, few studies have explored the views of middle-aged and older cancer survivors on this approach and potential variations in these views by gender or rural and urban residence. Objective: The aim of this study was to explore the views of middle-aged and older cancer survivors regarding the features of web-based healthy lifestyle programs to inform the development of a web-based diet and exercise intervention. Methods: Using a qualitative descriptive approach, we conducted 10 focus groups with 57 cancer survivors recruited from hospital cancer registries in 1 southeastern US state. Data were analyzed using inductive thematic and content analyses with NVivo (version 12.5, QSR International). Results: A total of 29 male and 28 female urban and rural dwelling Black and White survivors, with a mean age of 65 (SD 8.27) years, shared their views about a web-based healthy lifestyle program for cancer survivors. Five themes emerged related to program content, design, delivery, participation, technology training, and receiving feedback. Cancer survivors felt that web-based healthy lifestyle programs for cancer survivors must deliver credible, high-quality, and individually tailored information, as recommended by health care professionals or content experts. Urban survivors were more concerned about information reliability, whereas women were more likely to trust physicians’ recommendations. Male and rural survivors wanted information to be tailored to the cancer type and age group. Privacy, usability, interaction frequency, and session length were important factors for engaging cancer survivors with a web-based program. Female and rural participants liked the interactive nature and visual appeal of the e-learning sessions. Learning from experts, an attractive design, flexible schedule, and opportunity to interact with other cancer survivors in Facebook closed groups emerged as factors promoting program participation. Low computer literacy, lack of experience with web program features, and concerns about Facebook group privacy were important concerns influencing cancer survivors’ potential participation. Participants noted the importance of technology training, preferring individualized help to standardized computer classes. More rural cancer survivors acknowledged the need to learn how to use computers. The receipt of regular feedback about progress was noted as encouragement toward goal achievement, whereas women were particularly interested in receiving immediate feedback to stay motivated. Conclusions: Important considerations for designing web-based healthy lifestyle interventions for middle-aged and older cancer survivors include program quality, participants’ privacy, ease of use, attractive design, and the prominent role of health care providers and content experts. Cancer survivors’ preferences based on gender and residence should be considered to promote program participation. %M 34612832 %R 10.2196/26226 %U https://cancer.jmir.org/2021/4/e26226 %U https://doi.org/10.2196/26226 %U http://www.ncbi.nlm.nih.gov/pubmed/34612832 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 9 %P e30950 %T A Culturally Sensitive Social Support Intervention for Chinese American Breast Cancer Survivors (Joy Luck Academy): Protocol for a Randomized Controlled Trial %A Lu,Qian %A Warmoth,Krystal %A Chen,Lingjun %A Wu,Christine S %A Chu,Qiao %A Li,Yisheng %A Gallagher,Matthew W %A Stanton,Annette L %A Kagawa Singer,Marjorie %A Young,Lucy %A Loh,Alice %+ Department of Health Disparities Research, The University of Texas MD Anderson Cancer Center, 1400 Pressler Street, Unit 1440, Houston, TX, 77030, United States, 1 7137458324, qlu@mdanderson.org %K social support %K peer mentor support %K randomized controlled trial %K Chinese cancer survivors %K breast cancer %D 2021 %7 22.9.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Breast cancer is the most prevalent type of cancer among Asian American women. Chinese American immigrant breast cancer survivors face unique challenges because of cultural and socioecological factors. They report emotional distress and the need for social, emotional, and spiritual support. However, culturally and linguistically appropriate information for managing survivorship health care is often unavailable. Objective: To improve the health outcomes for this underserved and understudied population, we developed, designed, and launched a randomized controlled trial to test the health benefits of a culturally sensitive social support intervention (Joy Luck Academy). In this paper, we describe the research protocol. Methods: This randomized controlled trial will enroll Chinese-speaking, stage 0 to 3 breast cancer survivors who have completed treatment within the previous 36 months using a community-based participatory research approach. We will randomly assign 168 participants to the intervention or control group. The intervention arm will attend 7 weekly 3.5-hour peer mentor and educational sessions. The control group will receive the educational information. We will assess health outcomes at baseline, immediately after the Joy Luck Academy, and at 1- and 4-month follow-ups. The primary outcome is quality of life, as measured by the Functional Assessment of Cancer Therapy scale. Secondary outcomes include depressive symptoms, positive affect, fatigue, and perceived stress. We will also explore how the intervention influences cortisol levels. To identify how and to whom the program is effective, we will measure social and personal resources and theorized mechanisms and perform qualitative interviews with a subsample of participants to enhance the interpretation of quantitative data. Results: Recruitment began in February 2015, and data collection was completed in February 2019. We expect to complete data management by August 2021 and publish results in 2022. Conclusions: If the Joy Luck Academy is demonstrated to be effective, it may be easily disseminated as an intervention for other groups of Asian American immigrant breast cancer survivors. Furthermore, similar programs could be integrated into other diverse communities. Trial Registration: ClinicalTrials.gov NCT02946697; http://clinicaltrials.gov/ct2/show/NCT02946697. International Registered Report Identifier (IRRID): DERR1-10.2196/30950 %M 34550088 %R 10.2196/30950 %U https://www.researchprotocols.org/2021/9/e30950 %U https://doi.org/10.2196/30950 %U http://www.ncbi.nlm.nih.gov/pubmed/34550088 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 9 %P e24954 %T Development and Evaluation of a Decision Aid to Support Patients’ Participatory Decision-Making for Tumor-Specific and Palliative Therapy for Advanced Cancer: Protocol for a Pre-Post Study %A Laryionava,Katsiaryna %A Schildmann,Jan %A Wensing,Michael %A Wedding,Ullrich %A Surmann,Bastian %A Woydack,Lena %A Krug,Katja %A Winkler,Eva %+ Department of Medical Oncology, National Center for Tumor Diseases, Heidelberg University Hospital, Im Neuenheimer Feld 460, Heidelberg, 69120, Germany, 49 6221 56 36049, Eva.Winkler@med.uni-heidelberg.de %K decision aid %K neoplasms %K palliative care %K clinical trials %K longitudinal study %D 2021 %7 17.9.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: To support advanced cancer patients and their oncologists in therapeutic decisions, we aim to develop a decision aid (DA) in a multiphased, bicentric study. The DA aims to help patients to better understand risks and benefits of the available treatment options including the options of standard palliative care or cancer-specific treatment (ie, off-label drug use within an individual treatment plan). Objective: This study protocol outlines the development and testing of the DA in a pre-post study targeting a heterogeneous population of advanced cancer patients. Methods: In the first step, we will assess patients’ information and decisional needs as well as the views of the health care providers regarding the content and implementation of the DA. Through a scoping review, we aim to analyze specific characteristics of the decision-making process and to specify the treatment options, outcomes, and probabilities. An interdisciplinary research group of experts will develop and review the DA. In the second step, testing of the DA (design and field testing) with patients and oncologists will be conducted. As a last step, we will run a pre-post design study with 70 doctor-patient encounters to assess improvements on the primary study outcome: patients’ level of decisional conflict. In addition, the user acceptance of all involved parties will be tested. Results: Interviews with cancer patients, oncologists, and health care providers (ie, nurses, nutritionists) as well as a literature review from phase I have been completed. The field testing is scheduled for April 2021 to August 2021, with the final revision scheduled for September 2021. The pre-post study of the DA and acceptance testing are scheduled to start in October 2021 and shall be finished in September 2022. Conclusions: A unique feature of this study is the development of a DA for patients with different types of advanced cancer, which covers a wide range of topics relevant for patients near the end of life such as forgoing cancer-specific therapy and switching to best supportive care. Trial Registration: ClinicalTrials.gov NCT04606238; https://clinicaltrials.gov/ct2/show/NCT04606238. International Registered Report Identifier (IRRID): DERR1-10.2196/24954 %M 34533464 %R 10.2196/24954 %U https://www.researchprotocols.org/2021/9/e24954 %U https://doi.org/10.2196/24954 %U http://www.ncbi.nlm.nih.gov/pubmed/34533464 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 9 %P e27634 %T Effects of Message Framing on Cancer Prevention and Detection Behaviors, Intentions, and Attitudes: Systematic Review and Meta-analysis %A Ainiwaer,Abidan %A Zhang,Shuai %A Ainiwaer,Xiayiabasi %A Ma,Feicheng %+ School of Information Management, Wuhan University, No 299 Bayi Road, Wuchang District, Wuhan, China, 86 86 13507119710, fchma@whu.edu.cn %K gain framing %K loss framing %K attitude %K intention %K behaviors %K cancer prevention %K cancer detection %D 2021 %7 16.9.2021 %9 Review %J J Med Internet Res %G English %X Background: With the increasing health care burden of cancer, public health organizations are increasingly emphasizing the importance of calling people to engage in long-term prevention and periodical detection. How to best deliver behavioral recommendations and health outcomes in messaging is an important issue. Objective: This study aims to disaggregate the effects of gain-framed and loss-framed messages on cancer prevention and detection behaviors and intentions and attitudes, which has the potential to inform cancer control programs. Methods: A search of three electronic databases (Web of Science, Scopus, and PubMed) was conducted for studies published between January 2000 and December 2020. After a good agreement achieved on a sample by two authors, the article selection (κ=0.8356), quality assessment (κ=0.8137), and data extraction (κ=0.9804) were mainly performed by one author. The standardized mean difference (attitude and intention) and the odds ratio (behaviors) were calculated to evaluate the effectiveness of message framing (gain-framed message and loss-framed message). Calculations were conducted, and figures were produced by Review Manager 5.3. Results: The title and abstract of 168 unique citations were scanned, of which 53 were included for a full-text review. A total of 24 randomized controlled trials were included, predominantly examining message framing on cancer prevention and detection behavior change interventions. There were 9 studies that used attitude to predict message framing effect and 16 studies that used intention, whereas 6 studies used behavior to examine the message framing effect directly. The use of loss-framed messages improved cancer detection behavior (OR 0.76, 95% CI 0.64-0.90; P=.001), and the results from subgroup analysis indicated that the effect would be weak with time. No effect of framing was found when effectiveness was assessed by attitudes (prevention: SMD=0.02, 95% CI –0.13 to 0.17; P=.79; detection: SMD=–0.05, 95% CI –0.15 to 0.05; P=.32) or intentions (prevention: SMD=–0.05, 95% CI –0.19 to 0.09; P=.48; detection: SMD=0.02, 95% CI –0.26 to 0.29; P=.92) among studies encouraging cancer prevention and cancer detection. Conclusions: Research has shown that it is almost impossible to change people's attitudes or intentions about cancer prevention and detection with a gain-framed or loss-framed message. However, loss-framed messages have achieved preliminary success in persuading people to adopt cancer detection behaviors. Future studies could improve the intervention design to achieve better intervention effectiveness. %M 34528887 %R 10.2196/27634 %U https://www.jmir.org/2021/9/e27634 %U https://doi.org/10.2196/27634 %U http://www.ncbi.nlm.nih.gov/pubmed/34528887 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 7 %N 3 %P e29555 %T Understanding Communication in an Online Cancer Forum: Content Analysis Study %A Andy,Anietie %A Andy,Uduak %+ Penn Medicine Center for Digital Health, University of Pennsylvania, 3400 Civic Blvd, Philadelphia, PA, 19104, United States, 1 202 486 4095, andyanietie@gmail.com %K Cancer %K Reddit %K online forum %K natural language processing %K latent Dirichlet allocation %K Linguistic Inquiry and Word Count %K psycholinguistics %K social media %D 2021 %7 7.9.2021 %9 Original Paper %J JMIR Cancer %G English %X Background: Cancer affects individuals, their family members, and friends, and increasingly, some of these individuals are turning to online cancer forums to express their thoughts/feelings and seek support such as asking cancer-related questions. The thoughts/feelings expressed and the support needed from these online forums may differ depending on if (1) an individual has or had cancer or (2) an individual is a family member or friend of an individual who has or had cancer; the language used in posts in these forums may reflect these differences. Objective: Using natural language processing methods, we aim to determine the differences in the support needs and concerns expressed in posts published on an online cancer forum by (1) users who self-declare to have or had cancer compared with (2) users who self-declare to be family members or friends of individuals with or that had cancer. Methods: Using latent Dirichlet allocation (LDA), which is a natural language processing algorithm and Linguistic Inquiry and Word Count (LIWC), a psycholinguistic dictionary, we analyzed posts published on an online cancer forum with the aim to delineate the language features associated with users in these different groups. Results: Users who self-declare to have or had cancer were more likely to post about LDA topics related to hospital visits (Cohen d=0.671) and use words associated with LIWC categories related to health (Cohen d=0.635) and anxiety (Cohen d=0.126). By contrast, users who declared to be family members or friends tend to post about LDA topics related to losing a family member (Cohen d=0.702) and LIWC categories focusing on the past (Cohen d=0.465) and death (Cohen d=0.181) were more associated with these users. Conclusions: Using LDA and LIWC, we show that there are differences in the support needs and concerns expressed in posts published on an online cancer forum by users with cancer compared with family members or friends of those with cancer. Hence, responders to online cancer forums need to be cognizant of these differences in support needs and concerns and tailor their responses based on these findings. %M 34491209 %R 10.2196/29555 %U https://cancer.jmir.org/2021/3/e29555 %U https://doi.org/10.2196/29555 %U http://www.ncbi.nlm.nih.gov/pubmed/34491209 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 7 %N 3 %P e28234 %T Using Social Media for Peer-to-Peer Cancer Support: Interviews With Young Adults With Cancer %A Lazard,Allison J %A Collins,Meredith K Reffner %A Hedrick,Ashley %A Varma,Tushar %A Love,Brad %A Valle,Carmina G %A Brooks,Erik %A Benedict,Catherine %+ Hussman School of Journalism and Media, University of North Carolina at Chapel Hill, 384 Carroll Hall, Chapel Hill, NC, 27599, United States, 1 919 843 8304, lazard@unc.edu %K cancer survivors %K social support %K peer groups %K social media %K young adults %K pyscho-oncology %K mobile phone %D 2021 %7 2.9.2021 %9 Original Paper %J JMIR Cancer %G English %X Background: Web-based social support can address social isolation and unmet support needs among young adults with cancer (aged 18-39 years). Given that 94% of young adults own and use smartphones, social media can offer personalized, accessible social support among peers with cancer. Objective: This study aims to examine the specific benefits, downsides, and topics of social support via social media among young adults with cancer. Methods: We conducted semistructured interviews with young adults with cancer, aged between 18 and 39 years, who were receiving treatment or had completed treatment for cancer. Results: Most participants (N=45) used general audience platforms (eg, Facebook groups), and some cancer-specific social media (eg, Caring Bridge), to discuss relevant lived experiences for medical information (managing side effects and treatment uncertainty) and navigating life with cancer (parenting and financial issues). Participants valued socializing with other young adults with cancer, making connections outside their personal networks, and being able to validate their emotional and mental health experiences without time and physical constraints. However, using social media for peer support can be an emotional burden, especially when others post disheartening or harassing content, and can heighten privacy concerns, especially when navigating cancer-related stigma. Conclusions: Social media allows young adults to connect with peers to share and feel validated about their treatment and life concerns. However, barriers exist for receiving support from social media; these could be reduced through content moderation and developing more customizable, potentially cancer-specific social media apps and platforms to enhance one’s ability to find peers and manage groups. %M 34473063 %R 10.2196/28234 %U https://cancer.jmir.org/2021/3/e28234 %U https://doi.org/10.2196/28234 %U http://www.ncbi.nlm.nih.gov/pubmed/34473063 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 8 %P e23367 %T Patients With Cancer Searching for Cancer- or Health-Specific Web-Based Information: Performance Test Analysis %A Lange-Drenth,Lukas %A Schulz,Holger %A Endsin,Gero %A Bleich,Christiane %+ Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52, Hamburg, 20246, Germany, 49 040741056811, lu.lange@uke.de %K telemedicine %K eHealth %K eHealth literacy %K digital literacy %K internet %K web-based %K health information %K health education %K cancer %K mobile phone %D 2021 %7 16.8.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Searching the internet for cancer-related information helps patients with cancer satisfy their unmet information needs and empowers them to play a more active role in the management of their disease. However, to benefit from the search, patients need a sufficient level of skill to search, select, appraise, and apply web-based health information. Objective: We aim to study the operational, navigational, information, and evaluation skills and problems of patients with cancer performing cancer-related search tasks using the internet. Methods: A total of 21 patients with cancer were recruited during their stay at the rehabilitation clinic for oncological rehabilitation. Participants performed eight cancer-related search tasks using the internet. The participants were asked to think aloud while performing the tasks, and the screen activities were recorded. The types and frequencies of performance problems were identified and coded into categories following an inductive coding process. In addition, the performance and strategic characteristics of task execution were summarized descriptively. Results: All participants experienced problems or difficulties in executing the tasks, and a substantial percentage of tasks (57/142, 40.1%) could not be completed successfully. The participants’ performance problems were coded into four categories, namely operating the computer and web browser, navigating and orientating, using search strategies, and evaluating the relevance and reliability of web-based information. The most frequent problems occurred in the third and fourth categories. A total of 90% (19/21) of participants used nontask-related search terms or nonspecific search terms. A total of 95% (20/21) of participants did not control for the source or topicality of the information found. In addition, none of the participants verified the information on 1 website with that on another website for each task. Conclusions: A substantial group of patients with cancer did not have the necessary skills to benefit from cancer-related internet searches. Future interventions are needed to support patients in the development of sufficient internet-searching skills, focusing particularly on information and evaluation skills. %M 34398801 %R 10.2196/23367 %U https://www.jmir.org/2021/8/e23367 %U https://doi.org/10.2196/23367 %U http://www.ncbi.nlm.nih.gov/pubmed/34398801 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 8 %P e18502 %T Digital Patient-Reported Outcome Measures for Monitoring of Patients on Cancer Treatment: Cross-sectional Questionnaire Study %A Sivanandan,Mayuran Ananth %A Sharma,Catherine %A Bullard,Pippa %A Christian,Judith %+ Department of Oncology and Radiotherapy, Nottingham University Hospitals NHS Trust, Nottingham City Hospital, Hucknall Road, Nottingham, NG5 1PB, United Kingdom, 44 07859877635, ananthsiva@doctors.org.uk %K patient-reported outcome measures %K patient-reported outcomes %K remote monitoring %K toxicity %K outpatients %K digital technology %K digital health %K mobile health %K oncology %K chemotherapy %K immunotherapy %K radiotherapy %D 2021 %7 13.8.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: Oncology has been facing increasing outpatient activity associated with higher cancer incidence, better survival rates, and more treatment options. Innovative technological solutions could help deal with this increasing demand. Using digital patient-reported outcome measures (PROMs) to identify patients who need a face-to-face (FTF) appointment is a potential approach. Objective: This study aims to assess the feasibility of digital PROM questionnaires to enable remote symptom monitoring for patients undergoing cancer treatment and their ability to highlight the requirement for an FTF appointment. Methods: This study was performed at a tertiary oncology center between December 2018 and February 2019. The Common Terminology Criteria for Adverse Events were adapted into patient-friendly language to form the basis of treatment-specific digital questionnaires covering specific cancer drugs and radiotherapy treatments. These treatment-specific digital PROM questionnaires were scored by both patients and their clinicians during FTF appointments. Patients and clinicians did not see each other’s scored PROMs. Agreement between patients and clinicians was assessed using descriptive statistics. Patient and staff feedback was also obtained. Results: In total, 90 patients participated in the study across 10 different treatment pathways. By comparing paired patient and clinician responses, the sensitivity of the patient-completed questionnaires in correctly highlighting the need for FTF review was 94% (44/47), and all patients with severe or grade 3+ symptoms were identified (6/6, 100%). Patient-completed PROMs appropriately revealed that 29% (26/90) of the participating patients did not need FTF review based on their symptoms alone. Certain oncological treatment pathways, such as immunotherapy, were found to have a larger proportion of patients with minimal symptoms than others, such as conventional chemotherapy. Patient and staff feedback showed high approval of digital PROMs and their potential for use in remote monitoring. Conclusions: Digital PROM questionnaires can feasibly highlight the need for FTF review in oncology clinics for treatment. Their use with specific treatments could safely reduce the requirement for FTF care, and future work should evaluate their application in the remote monitoring of patients. %M 34398785 %R 10.2196/18502 %U https://formative.jmir.org/2021/8/e18502 %U https://doi.org/10.2196/18502 %U http://www.ncbi.nlm.nih.gov/pubmed/34398785 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 7 %N 3 %P e30265 %T Improving Electronic Survey Response Rates Among Cancer Center Patients During the COVID-19 Pandemic: Mixed Methods Pilot Study %A Hathaway,Cassandra A %A Chavez,Melody N %A Kadono,Mika %A Ketcher,Dana %A Rollison,Dana E %A Siegel,Erin M %A Peoples,Anita R %A Ulrich,Cornelia M %A Penedo,Frank J %A Tworoger,Shelley S %A Gonzalez,Brian D %+ Department of Cancer Epidemiology, Moffitt Cancer Center, 13131 USF Magnolia Drive, MRC 2nd Floor, Tampa, FL, 33612, United States, 1 813 745 1810, Shelley.Tworoger@moffitt.org %K response rates %K electronic survey %K cancer %K COVID-19 %K pandemic %K surveillance %K cancer patients %K health promotion %K digital health %K patient experience %K health outcomes %D 2021 %7 6.8.2021 %9 Original Paper %J JMIR Cancer %G English %X Background: Surveys play a vital role in cancer research. During the COVID-19 pandemic, the use of electronic surveys is crucial to improve understanding of the patient experience. However, response rates to electronic surveys are often lower compared with those of paper surveys. Objective: The aim of this study was to determine the best approach to improve response rates for an electronic survey administered to patients at a cancer center during the COVID-19 pandemic. Methods: We contacted 2750 patients seen at Moffitt Cancer Center in the prior 5 years via email to complete a survey regarding their experience during the COVID-19 pandemic, with patients randomly assigned to a series of variations of prenotifications (ie, postcard, letter) or incentives (ie, small gift, modest gift card). In total, eight combinations were evaluated. Qualitative interviews were conducted to understand the level of patient understanding and burden with the survey, and quantitative analysis was used to evaluate the response rates between conditions. Results: A total of 262 (9.5%) patients completed the survey and 9 participated in a qualitative interview. Interviews revealed minimal barriers in understanding or burden, which resulted in minor survey design changes. Compared to sending an email only, sending a postcard or letter prior to the email improved response rates from 3.7% to 9.8%. Similarly, inclusion of an incentive significantly increased the response rate from 5.4% to 16.7%, especially among racial (3.0% to 12.2%) and ethnic (6.4% to 21.0%) minorities, as well as among patients with low socioeconomic status (3.1% to 14.9%). Conclusions: Strategies to promote effective response rates include prenotification postcards or letters as well as monetary incentives. This work can inform future survey development to increase response rates for electronic surveys, particularly among hard-to-reach populations. %M 34156965 %R 10.2196/30265 %U https://cancer.jmir.org/2021/3/e30265 %U https://doi.org/10.2196/30265 %U http://www.ncbi.nlm.nih.gov/pubmed/34156965 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 7 %N 3 %P e28527 %T Search Behavior Regarding Cancer Susceptibility Genes Using a Clinical Decision Support Tool for Gene-Specific Penetrance: Content Analysis %A Yin,Kanhua %A Zhou,Jingan %A Singh,Preeti %A Wang,Jin %A Braun,Danielle %A Hughes,Kevin S %+ Division of Surgical Oncology, Massachusetts General Hospital, 55 Fruit Street, Yawkey 7, Boston, MA, 02114, United States, 1 617 724 0048, kshughes@partners.org %K genetic testing %K pathogenic variant %K germline %K risk communication %K online health %K digital health %K cancer data %K genetics %K online tool %K bioinformatics %K web tool %K cancer %D 2021 %7 13.7.2021 %9 Original Paper %J JMIR Cancer %G English %X Background: Genetic testing for germline cancer susceptibility genes is widely available. The Ask2Me.org (All Syndromes Known to Man Evaluator) tool is a clinical decision support tool that provides evidence-based risk predictions for individuals with pathogenic variants in cancer susceptibility genes. Objective: The aim of this study was to understand the search behavior of the Ask2Me.org tool users, identify the patterns of queries entered, and discuss how to further improve the tool. Methods: We analyzed the Ask2Me.org user-generated queries collected between December 12, 2018, and October 8, 2019. The gene frequencies of the user-generated queries were compared with previously published panel testing data to assess the correspondence between usage and prevalence of pathogenic variants. The frequencies of prior cancer in the user-generated queries were compared with the most recent US population–based cancer incidence. Results: A total of 10,085 search queries were evaluated. The average age submitted in the queries was 48.8 (SD 16.5) years, and 84.1% (8478/10,085) of the submitted queries were for females. BRCA2 (1671/10,085, 16.6%), BRCA1 (1627/10,085, 16.1%), CHEK2 (994/10,085, 9.9%), ATM (662/10,085, 6.6%), and APC (492/10,085, 4.9%) were the top 5 genes searched by users. There was a strong linear correlation between genes queried by users and the frequency of pathogenic variants reported in published panel testing data (r=0.95, r2=0.90, P<.001). Over half of the queries (5343/10,085, 53.0%) included a prior personal history of cancer. The frequencies of prior cancers in the queries on females were strongly correlated with US cancer incidences (r=0.97, r2=0.95, P<.001), while the same correlation was weaker among the queries on males (r=0.69, r2=0.47, P=.02). Conclusions: The patients entered in the Ask2Me.org tool are a representative cohort of patients with pathogenic variants in cancer susceptibility genes in the United States. While a majority of the queries were on breast cancer susceptibility genes, users also queried susceptibility genes with lower prevalence, which may represent a transformation from single gene testing to multigene panel testing. Owing to these changing tides, more efforts are needed to improve evidence-based clinical decision support tools to better aid clinicians and their practice. %M 34255640 %R 10.2196/28527 %U https://cancer.jmir.org/2021/3/e28527 %U https://doi.org/10.2196/28527 %U http://www.ncbi.nlm.nih.gov/pubmed/34255640 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 7 %N 2 %P e23637 %T Development of a Digital Patient Education Tool for Patients With Cancer During the COVID-19 Pandemic %A Turkdogan,Sena %A Schnitman,Gabriel %A Wang,Tianci %A Gotlieb,Raphael %A How,Jeffrey %A Gotlieb,Walter Henri %+ Department of Physiology, McGill University, 3649 Promenade Sir-William-Osler, Montreal, QC, , Canada, 1 5144757717, tianci.wang@mail.mcgill.ca %K digital health %K eHealth %K patient education %K COVID-19 %D 2021 %7 21.6.2021 %9 Viewpoint %J JMIR Cancer %G English %X Background: Due to the COVID-19 pandemic, a large portion of oncology consultations have been conducted remotely. The maladaptation or compromise of care could negatively impact oncology patients and their disease management. Objective: We aimed to describe the development and implementation process of a web-based, animated patient education tool that supports oncology patients remotely in the context of fewer in-person interactions with health care providers. Methods: The platform created presents multilingual oncology care instructions. Animations concerning cancer care and mental health during the COVID-19 pandemic as well as immunotherapy and chemotherapy guides were the major areas of focus and represented 6 final produced video guides. Results: The videos were watched 1244 times in a period of 6 months. The most watched animation was the COVID-19 & Oncology guide (viewed 565 times), followed by the video concerning general treatment orientations (viewed 249 times) and the video titled “Chemotherapy” (viewed 205 times). Although viewers were equally distributed among the age groups, most were aged 25 to 34 years (342/1244, 27.5%) and were females (745/1244, 59.9%). Conclusions: The implementation of a patient education platform can be designed to prepare patients and their caregivers for their treatment and thus improve outcomes and satisfaction by using a methodical and collaborative approach. Multimedia tools allow a portion of a patient’s care to occur in a home setting, thereby freeing them from the need for hospital resources. %M 34101611 %R 10.2196/23637 %U https://cancer.jmir.org/2021/2/e23637 %U https://doi.org/10.2196/23637 %U http://www.ncbi.nlm.nih.gov/pubmed/34101611 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 6 %P e23839 %T Perceptions of Racially and Ethnically Diverse Women at High Risk of Breast Cancer Regarding the Use of a Web-Based Decision Aid for Chemoprevention: Qualitative Study Nested Within a Randomized Controlled Trial %A Jones,Tarsha %A Guzman,Ashlee %A Silverman,Thomas %A Freeman,Katherine %A Kukafka,Rita %A Crew,Katherine %+ Florida Atlantic University, 777 Glades Road, Boca Raton, FL, 33431, United States, 1 561 297 4975, Jonest@health.fau.edu %K breast cancer %K chemoprevention %K qualitative %K decision support %K cancer %K estrogen receptor %K web-based %K cancer risk %D 2021 %7 8.6.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Chemopreventive agents such as selective estrogen receptor modulators and aromatase inhibitors have proven efficacy in reducing breast cancer risk by 41% to 79% in high-risk women. Women at high risk of developing breast cancer face the complex decision of whether to take selective estrogen receptor modulators or aromatase inhibitors for breast cancer chemoprevention. RealRisks is a patient-centered, web-based decision aid (DA) designed to promote the understanding of breast cancer risk and to engage diverse women in planning a preference-sensitive course of decision making about taking chemoprevention. Objective: This study aims to understand the perceptions of women at high risk of developing breast cancer regarding their experience with using RealRisks—a DA designed to promote the uptake of breast cancer chemoprevention—and to understand their information needs. Methods: We completed enrollment to a randomized controlled trial among 300 racially and ethnically diverse women at high risk of breast cancer who were assigned to standard educational materials alone or such materials in combination with RealRisks. We conducted semistructured interviews with a subset of 21 high-risk women enrolled in the intervention arm of the randomized controlled trial who initially accessed the tool (on average, 1 year earlier) to understand how they interacted with the tool. All interviews were audio recorded, transcribed verbatim, and compared with digital audio recordings to ensure the accuracy of the content. We used content analysis to generate themes. Results: The mean age of the 21 participants was 58.5 (SD 10.1) years. The participants were 5% (1/21) Asian, 24% (5/21) Black or African American, and 71% (15/21) White; 10% (2/21) of participants were Hispanic or Latina. All participants reported using RealRisks after being granted access to the DA. In total, 4 overarching themes emerged from the qualitative analyses: the acceptability of the intervention, specifically endorsed elements of the DA, recommendations for improvements, and information needs. All women found RealRisks to be acceptable and considered it to be helpful (21/21, 100%). Most women (13/21, 62%) reported that RealRisks was easy to navigate, user-friendly, and easily accessible on the web. The majority of women (18/21, 86%) felt that RealRisks improved their knowledge about breast cancer risk and chemoprevention options and that RealRisks informed their (17/21, 81%) decision about whether or not to take chemoprevention. Some women (9/21, 43%) shared recommendations for improvements, as they wanted more tailoring based on user characteristics, felt that the DA was targeting a narrow population of Hispanic or Latina by using graphic novel–style narratives, wanted more understandable terminology, and felt that the tool placed a strong emphasis on chemoprevention drugs. Conclusions: This qualitative study demonstrated the acceptability of the RealRisks web-based DA among a diverse group of high-risk women, who provided some recommendations for improvement. %M 34100769 %R 10.2196/23839 %U https://www.jmir.org/2021/6/e23839 %U https://doi.org/10.2196/23839 %U http://www.ncbi.nlm.nih.gov/pubmed/34100769 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 5 %P e16156 %T A Novel Digital Patient-Reported Outcome Platform (Noona) for Clinical Use in Patients With Cancer: Pilot Study Assessing Suitability %A Peltola,Maria Kristiina %A Poikonen-Saksela,Paula %A Mattson,Johanna %A Parkkari,Timo %+ Department of Oncology, Helsinki University Hospital Comprehensive Cancer Center, Helsinki University, Paciuksenkatu 3, Helsinki, 00029, Finland, 358 504900591, maria.k.peltola@hus.fi %K electronic patient-reported outcome %K adverse events %K patients with cancer %D 2021 %7 6.5.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: As the incidence of cancer is on the rise, there is a need to develop modern communication tools between patients and the medical personnel. Electronic patient-reported outcome (ePRO) measures increase the safety of cancer treatments and may have an impact on treatment outcome as well. ePRO may also provide a cost-efficient way to organize follow-up for patients with cancer. Noona is an internet-based system for patients to self-report symptoms and adverse events of cancer treatments from home via a computer or a smart device (eg, smartphone, tablet). Objective: In this pilot study, we assessed the suitability of a novel ePRO application (Noona) for patients with cancer, nurses, and doctors at the Helsinki University Hospital, Finland. Methods: The study included 44 patients with cancer (different solid tumor types) and 17 health care professionals (nurses or medical doctors). Patients were either operated or received systemic treatment or radiotherapy. Patients reported their symptoms to the medical staff via Noona. In addition, patients and clinicians answered a questionnaire, based on which Noona’s suitability for clinical use was evaluated in terms of usability (ease of use, operability, and learnability), reliability (subjective opinion of the participant), and incidence of harmful events reported by the participants. Results: A total of 41/44 (93%) patients and 15/17 (88%) professionals reported that the program was easy or quite easy to use; 38/44 (86%) patients and 11/17 (65%) professionals found Noona reliable, and 38/44 (86%) patients and 10/17 (59%) professionals would recommend Noona to other patients or their colleagues. No harmful incidences caused by the use of Noona were reported by the patients; however, 1 harmful incidence was reported by one of the professionals. Conclusions: The majority of the participants felt that Noona appeared reliable and it was easy to use. Noona seems to be a useful tool for monitoring patient’s symptoms during cancer therapy. Future studies will determine the impact of this ePRO platform in routine clinical practice. %M 33955841 %R 10.2196/16156 %U https://formative.jmir.org/2021/5/e16156 %U https://doi.org/10.2196/16156 %U http://www.ncbi.nlm.nih.gov/pubmed/33955841 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 7 %N 1 %P e26950 %T Effect of Collaborative Review of Electronic Patient-Reported Outcomes for Shared Reporting in Breast Cancer Patients: Descriptive Comparative Study %A Trojan,Andreas %A Bättig,Basil %A Mannhart,Meinrad %A Seifert,Burkhardt %A Brauchbar,Mathis N %A Egbring,Marco %+ OnkoZentrum Zürich, Seestrasse 259, Zürich, CH-8038, Switzerland, 41 763430200, trojan@1st.ch %K cancer %K Consilium Care %K smartphone app %K eHealth %K electronic patient-reported outcomes %K Common Terminology Criteria for Adverse Events %D 2021 %7 17.3.2021 %9 Original Paper %J JMIR Cancer %G English %X Background: Digital monitoring of treatment-related symptoms and self-reported patient outcomes is important for the quality of care among cancer patients. As mobile devices are ubiquitous nowadays, the collection of electronic patient-reported outcomes (ePROs) is gaining momentum. So far, data are lacking on the modalities that contribute to the quantity and quality of ePROs. Objective: The objective of our study was to compare the utilization of two versions of a subsequently employed mobile app for electronic monitoring of PROs and to test our hypothesis that a shared review of symptoms in patient-physician collaboration has an impact on the number of data entries. Methods: The Consilium Care app engages cancer patients to standardize reporting of well-being and treatment-related symptoms in outpatient settings. For descriptive comparison of the utilization of two slightly different app versions, data were obtained from an early breast cancer trial (version 1 of the app, n=86) and an ongoing study including patients with advanced disease (version 2 of the app, n=106). In both app versions, patients and doctors were allowed to share the information from data entries during consultations. Version 2 of the app, however, randomly selected symptoms that required a detailed and shared regular patient-doctor review in order to focus on the collection and appropriate interpretation regarding awareness and guidance for severity grading. The numbers and types of symptom entries, satisfaction with both app versions, and patients’ perceived effects during consultations were included for analysis. Results: Symptom severity grading was performed according to the Common Terminology Criteria for Adverse Events (CTCAE) using a horizontal slider and was indicated in descriptive terminology in both apps, while a graphical display facilitated the illustration of symptom history charts. In total, 192 patients electronically reported 11,437 data entries on well-being and 33,380 data entries on individual symptoms. Overall, 628 (of 872 intended) requested patient-doctor symptom reviews were performed in version 2 of the app. Both the amount of data entries per patient and day for well-being (version 1 vs version 2: 0.3 vs 1.0; P<.001) and symptoms (version 1 vs version 2: 1.3 vs 1.9; P=.04) appeared significantly increased in version 2 of the app. Overall satisfaction with both app versions was high, although version 2 of the app was perceived to be more helpful in general. Conclusions: Version 2 of the app showed much better results than version 1 of the app. A request for collaborative patient-doctor symptom review is likely to affect the number of digital symptom data entries. This app shows high potential to improve the patient-doctor experience. Trial Registration: ClinicalTrials.gov NCT02004496; https://clinicaltrials.gov/ct2/show/NCT02004496 and ClinicalTrials.gov NCT03578731; https://clinicaltrials.gov/ct2/show/NCT03578731 %M 33729162 %R 10.2196/26950 %U https://cancer.jmir.org/2021/1/e26950 %U https://doi.org/10.2196/26950 %U http://www.ncbi.nlm.nih.gov/pubmed/33729162 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 2 %P e25056 %T Personal Accounts of Young-Onset Colorectal Cancer Organized as Patient-Reported Data: Protocol for a Mixed Methods Study %A Lamprell,Klay %A Fajardo Pulido,Diana %A Tran,Yvonne %A Nic Giolla Easpaig,Bróna %A Liauw,Winston %A Arnolda,Gaston %A Braithwaite,Jeffrey %+ Australian Institute of Health Innovation, Macquarie University, Level 6, 75 Talavera Road, New South Wales, Sydney, 2109, Australia, 61 2 9850 2472, klay.lamprell@mq.edu.au %K colorectal cancer %K PROMs %K young-onset cancer %K cancer %K patient reported outcome %D 2021 %7 26.2.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Young-onset colorectal cancer is a contemporary issue in need of substantial research input. The incidence of colorectal cancer in adults younger than 50 years is rising in contrast to the decreasing incidence of this cancer in older adults. People with young-onset colorectal cancer may be at that stage of life in which they are establishing their careers, building relationships with long-term partners, raising children, and assembling a financial base for the future. A qualitative study designed to facilitate triangulation with extant quantitative patient-reported data would contribute the first comprehensive resource for understanding how this distinct patient population experiences health services and the outcomes of care throughout the patient pathway. Objective: The aim of this study was to undertake a mixed-methods study of qualitative patient-reported data on young-onset colorectal cancer experiences and outcomes. Methods: This is a study of web-based unsolicited patient stories recounting experiences of health services and clinical outcomes related to young-onset colorectal cancer. Personal Recollections Organized as Data (PROD) is a novel methodology for understanding patients’ health experiences in order to improve care. PROD pivots qualitative data collection and analysis around the validated domains and dimensions measured in patient-reported outcome and patient-reported experience questionnaires. PROD involves 4 processes: (1) classifying attributes of the contributing patients, their disease states, their routes to diagnosis, and the clinical features of their treatment and posttreatment; (2) coding texts into the patient-reported experience and patient-reported outcome domains and dimensions, defined a priori, according to phases of the patient pathway; (3) thematic analysis of content within and across each domain; and (4) quantitative text analysis of the narrative content. Results: Relevant patient stories have been identified, and permission has been obtained for use of the texts in primary research. The approval for this study was granted by the Macquarie University Human Research Ethics Committee in June 2020. The analytical framework was established in September 2020, and data collection commenced in October 2020. We will complete the analysis in March 2021 and we aim to publish the results in mid-2021. Conclusions: The findings of this study will identify areas for improvement in the PROD methodology and inform the development of a large-scale study of young-onset colorectal cancer patient narratives. We believe that this will be the first qualitative study to identify and describe the patient pathway from symptom self-identification to help-seeking through to diagnosis, treatment, and to survivorship or palliation for people with young-onset colorectal cancer. International Registered Report Identifier (IRRID): DERR1-10.2196/25056 %M 33635274 %R 10.2196/25056 %U https://www.researchprotocols.org/2021/2/e25056 %U https://doi.org/10.2196/25056 %U http://www.ncbi.nlm.nih.gov/pubmed/33635274 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 1 %P e24414 %T Long-Term Morbidity and Health After Early Menopause Due to Oophorectomy in Women at Increased Risk of Ovarian Cancer: Protocol for a Nationwide Cross-Sectional Study With Prospective Follow-Up (HARMOny Study) %A Terra,Lara %A Hooning,Maartje J %A Heemskerk-Gerritsen,Bernadette A M %A van Beurden,Marc %A Roeters van Lennep,Jeanine E %A van Doorn,Helena C %A de Hullu,Joanne A %A Mom,Constantijne %A van Dorst,Eleonora B L %A Mourits,Marian J E %A Slangen,Brigitte F M %A Gaarenstroom,Katja N %A Zillikens,M Carola %A Leiner,Tim %A van der Kolk,Lizet %A Collee,Margriet %A Wevers,Marijke %A Ausems,Margreet G E M %A van Engelen,Klaartje %A Berger,Lieke PV %A van Asperen,Christi J %A Gomez-Garcia,Encarna B %A van de Beek,Irma %A Rookus,Matti A %A Hauptmann,Michael %A Bleiker,Eveline M %A Schagen,Sanne B %A Aaronson,Neil K %A Maas,Angela H E M %A van Leeuwen,Flora E %+ Department of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Plesmanlaan 121, H8. PSOE, Amsterdam, 1066CX, Netherlands, 31 020 5122480, f.v.leeuwen@nki.nl %K risk-reducing salpingo-oophorectomy %K BRCA1/2 %K cardiovascular disease %K osteoporosis %K cognition %K health-related quality of life %D 2021 %7 22.1.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: BRCA1/2 mutation carriers are recommended to undergo risk-reducing salpingo-oophorectomy (RRSO) at 35 to 45 years of age. RRSO substantially decreases ovarian cancer risk, but at the cost of immediate menopause. Knowledge about the potential adverse effects of premenopausal RRSO, such as increased risk of cardiovascular disease, osteoporosis, cognitive dysfunction, and reduced health-related quality of life (HRQoL), is limited. Objective: The aim of this study is to assess the long-term health effects of premenopausal RRSO on cardiovascular disease, bone health, cognitive functioning, urological complaints, sexual functioning, and HRQoL in women with high familial risk of breast or ovarian cancer. Methods: We will conduct a multicenter cross-sectional study with prospective follow-up, nested in a nationwide cohort of women at high familial risk of breast or ovarian cancer. A total of 500 women who have undergone RRSO before 45 years of age, with a follow-up period of at least 10 years, will be compared with 250 women (frequency matched on current age) who have not undergone RRSO or who have undergone RRSO at over 55 years of age. Participants will complete an online questionnaire on lifestyle, medical history, cardiovascular risk factors, osteoporosis, cognitive function, urological complaints, and HRQoL. A full cardiovascular assessment and assessment of bone mineral density will be performed. Blood samples will be obtained for marker analysis. Cognitive functioning will be assessed objectively with an online neuropsychological test battery. Results: This study was approved by the institutional review board in July 2018. In February 2019, we included our first participant. As of November 2020, we had enrolled 364 participants in our study. Conclusions: Knowledge from this study will contribute to counseling women with a high familial risk of breast/ovarian cancer about the long-term health effects of premenopausal RRSO. The results can also be used to offer health recommendations after RRSO. Trial Registration: ClinicalTrials.gov NCT03835793; https://clinicaltrials.gov/ct2/show/NCT03835793. International Registered Report Identifier (IRRID): DERR1-10.2196/24414 %M 33480862 %R 10.2196/24414 %U http://www.researchprotocols.org/2021/1/e24414/ %U https://doi.org/10.2196/24414 %U http://www.ncbi.nlm.nih.gov/pubmed/33480862 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 10 %P e20510 %T Information Access and Use by Patients With Cancer and Their Friends and Family: Development of a Grounded Theory %A Thiessen,Maclean %A Sinclair,Shane %A Tang,Patricia A %A Raffin Bouchal,Shelley %+ Research Institute in Oncology and Hematology, CancerCare Manitoba, 675 McDermot Avenue, Winnipeg, MB, R3E 0V9, Canada, 1 2047878776, macthiessen@gmail.com %K persons %K personal autonomy %K patient-centered care %K health education %K health information–seeking behavior %K grounded theory %K empowerment %K cancer %K qualitative research %K adaptation, psychological %K mobile phone %D 2020 %7 29.10.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Information has been identified as a commonly unmet supportive care need for those living with cancer (ie, patients and their friends and family). The information needed to help individuals plan their lives around the consequences of cancer, such as the receipt of health care, is an example of an important informational need. A suitable theory to guide the development of interventions designed to meet this informational need has not been identified by the authors. Objective: The aim of this study is to generate a grounded theory capable of guiding the development of interventions designed to assist those living with cancer in meeting their informational needs. Methods: Classic grounded theory was used to analyze data collected through digitally recorded one-on-one audio interviews with 31 patients with cancer and 29 friends and family members. These interviews focused on how the participants had accessed and used information to plan their lives and what barriers they faced in obtaining and using this information. Results: The theory that emerged consisted of 4 variables: personal projects, cancer as a source of disruption to personal projects, information as the process of accessing and interpreting cancer-related data (CRD) to inform action, and CRD quality as defined by accessibility, credibility, applicability, and framing. CRD quality as a moderator of personal project disruption by cancer is the core concept of this theory. Conclusions: Informational resources providing accessible, credible, applicable, and positively framed CRD are likely key to meeting the information needs of those affected by cancer. Web-based informational resources delivering high-quality CRD focused on assisting individuals living with cancer in maintaining and planning their personal projects are predicted to improve quality of life. Research is needed to develop and integrate resources informed by this theoretical framework into clinical practice. %M 33118940 %R 10.2196/20510 %U http://www.jmir.org/2020/10/e20510/ %U https://doi.org/10.2196/20510 %U http://www.ncbi.nlm.nih.gov/pubmed/33118940 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 6 %N 2 %P e17352 %T Differences in Electronic Personal Health Information Tool Use Between Rural and Urban Cancer Patients in the United States: Secondary Data Analysis %A Greenberg-Worisek,Alexandra %A Ferede,Liaa %A Balls-Berry,Joyce %A Marigi,Ian %A Valentin Mendez,Emily %A Bajwa,Numra %A Ouk,Melody %A Orellana,Minerva %A Enders,Felicity %+ Mayo Clinic, 200 First St SW, Rochester, MN, United States, 1 773 354 2018, worisek.alexandra@gmail.com %K cancer %K patient engagement %K health research %K digital divide %K disparities %D 2020 %7 10.8.2020 %9 Original Paper %J JMIR Cancer %G English %X Background: Studies have previously shown that rural cancer patients are diagnosed at later stages of disease. This delay is felt throughout treatment and follow-up, reflected in the fact that rural patients often have poorer clinical outcomes compared with their urban counterparts. Objective: Few studies have explored whether there is a difference in cancer patients’ current use of health information technology tools by residential location. Methods: Data from 7 cycles of the Health Information National Trends Survey (HINTS, 2003-2017) were merged and analyzed to examine whether differences exist in managing electronic personal health information (ePHI) and emailing health care providers among rural and urban cancer patients. Geographic location was categorized using Rural-Urban Continuum Codes (RUCCs). Bivariate analyses and multivariable logistic regression were used to determine whether associations existed between rural/urban residency and use of health information technology among cancer patients. Results: Of the 3031 cancer patients/survivors who responded across the 7 cycles of HINTS, 797 (26.9%) resided in rural areas. No difference was found between rural and urban cancer patients in having managed ePHI in the past 12 months (OR 0.78, 95% CI 0.43-1.40). Rural cancer patients were significantly less likely to email health care providers than their urban counterparts (OR 0.52, 95% CI 0.32-0.84). Conclusions: The digital divide between rural and urban cancer residents does not extend to general ePHI management; however, electronic communication with providers is significantly lower among rural cancer patients than urban cancer patients. Further research is needed to determine whether such disparities extend to other health information technology tools that might benefit rural cancer patients as well as other chronic conditions. %M 32773369 %R 10.2196/17352 %U http://cancer.jmir.org/2020/2/e17352/ %U https://doi.org/10.2196/17352 %U http://www.ncbi.nlm.nih.gov/pubmed/32773369 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 2 %P e10404 %T Developing a Decision-Aid Website for Breast Cancer Surgery: An Action Research Approach %A Hung,Yu-Ting %A Wu,Ching-Fang %A Liang,Te-Hsin %A Chou,Shin-Shang %A Chen,Guan-Liang %A Wu,Pei-Ni %A Su,Guan-Rong %A Jang,Tsuey-Huah %A Liu,Chang-Yi %A Wang,Ching-Yen %A Tseng,Ling-Ming %A Sheu,Shuh-Jen %+ Institute of Community Health Care, School of Nursing, National Yang-Ming University, Nursing Building Room 404, Number 155, Section 2, Linong Street, Taipei, 11221, Taiwan, 886 2 28267271, sjsheu@ym.edu.tw %K breast cancer %K surgery-related decision making %K website %K action research %D 2019 %7 04.02.2019 %9 Original Paper %J J Med Internet Res %G English %X Background: Patients with early-stage breast cancer have numerous options when choosing the type of breast surgery method to be applied. Each of these options lead to a similar long-term survival rate, but result in significant differences in appearance, function, cost, recurrence rate, and various other relevant considerations. However, the time available for detailed communication with each patient is often limited in clinics, which puts these women under great psychological stress and can hinder their surgery-related decision making. Objective: The objective of this study was to develop a multipurpose surgery decision-making website providing medical information, psychological support, and decision-related simulation for women during breast cancer surgery-related decision making. Methods: Using the 4 steps of action research, which involve multigroup teamwork via regular team meetings, the following were performed: (1) Planning: searching, analyzing, and evaluating health websites to consensually decide the major infrastructure; (2) Action: work was performed simultaneously in 4 groups, which consisted of medical information collection and editing, patient interviews and data extraction, webpage content design, and programming to create or host the website; (3) Evaluation: the website was tested by clinical experts and focus groups of former breast cancer patients to assess its effectiveness and pinpoint appropriate improvements; and (4) Reflection: constant dialogue was conducted between the various participants at each step, which was used as the foundation and motivation of next plan-action-evaluation-reflection circle. Results: Using the action research approach, we completed the development of our website, which includes the following: (1) “Woman’s Voice”—an animated comic depicting the story of a female breast cancer patient with interspersed questions for the users that will help them better empathize with the experience; (2) “Cancer Information Treasure House”—providing breast cancer surgery-related information through text, tables, pictures and a presentation video; (3) “Decision-making Simulator”—helping patients think through and check the pros and cons of the different surgical options via visual-based interactions including “Stairs Climbing” and “Fruit of Hope”; and (4) “Recommended Links”—providing reliable websites for further reference. Additionally, we have further improved the website based on the feedback received from postsurgery breast cancer patients and clinicians. We hope to continue improving to better meet both the patients’ and health providers’ needs and become a practical decision-making aid for patients undergoing breast cancer surgery. Conclusions: We have created the first breast cancer surgery decision-making assistance tool in Taiwan using a “Web-based” and multifunctional website design. This site aims to provide health care knowledge, psychological healing, and emotional support functions, as well as decision-making capability enhancement simulations. We look forward to assisting breast cancer patients in their decision-making process and expect our website to increase patient’s autonomy and improve their communication with clinicians. %M 30714941 %R 10.2196/10404 %U https://www.jmir.org/2019/2/e10404/ %U https://doi.org/10.2196/10404 %U http://www.ncbi.nlm.nih.gov/pubmed/30714941 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 4 %N 2 %P e10676 %T Exploring the Most Visible German Websites on Melanoma Immunotherapy: A Web-Based Analysis %A Brütting,Julia %A Steeb,Theresa %A Reinhardt,Lydia %A Berking,Carola %A Meier,Friedegund %+ Department of Dermatology, Dresden University Hospital and Medical Faculty Carl Gustav Carus, Technical University of Dresden, Fetscherstraße 74, Dresden, 01307, Germany, 49 176 207 896 27, julia.bruetting@uniklinikum-dresden.de %K melanoma %K immunotherapy %K internet %K patient education %K quality %K readability %K websites %K reliability %K information %D 2018 %7 13.12.2018 %9 Original Paper %J JMIR Cancer %G English %X Background: Patients diagnosed with melanoma frequently search the internet for treatment information, including novel and complex immunotherapy. However, health literacy is limited among half of the German population, and no assessment of websites on melanoma treatment has been performed so far. Objective: The aim of this study was to identify and assess the most visible websites in German language on melanoma immunotherapy. Methods: In accordance with the common Web-based information-seeking behavior of patients with cancer, the first 20 hits on Google, Yahoo, and Bing were searched for combinations of German synonyms for “melanoma” and “immunotherapy” in July 2017. Websites that met our predefined eligibility criteria were considered for assessment. Three reviewers independently assessed their quality by using the established DISCERN tool and by checking the presence of quality certification. Usability and reliability were evaluated by the LIDA tool and understandability by the Patient Education Materials Assessment Tool (PEMAT). The Flesch Reading Ease Score (FRES) was calculated to estimate the readability. The ALEXA and SISTRIX tools were used to investigate the websites’ popularity and visibility. The interrater agreement was determined by calculating Cronbach alpha. Subgroup differences were identified by t test, U test, or one-way analysis of variance. Results: Of 480 hits, 45 single websites from 30 domains were assessed. Only 2 website domains displayed a German quality certification. The average assessment scores, mean (SD), were as follows: DISCERN, 48 (7.6); LIDA (usability), 40 (2.0); LIDA (reliability), 10 (1.6); PEMAT, 69% (16%); and FRES, 17 (14), indicating mediocre quality, good usability, and understandability but low reliability and an even very low readability of the included individual websites. SISTRIX scores ranged from 0 to 6872 and ALEXA scores ranged from 17 to 192,675, indicating heterogeneity of the visibility and popularity of German website domains providing information on melanoma immunotherapy. Conclusions: Optimization of the most accessible German websites on melanoma immunotherapy is desirable. Especially, simplification of the readability of information and further adaption to reliability criteria are required to support the education of patients with melanoma and laypersons, and to enhance transparency. %M 30545808 %R 10.2196/10676 %U https://cancer.jmir.org/2018/2/e10676/ %U https://doi.org/10.2196/10676 %U http://www.ncbi.nlm.nih.gov/pubmed/30545808 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 20 %N 10 %P e11006 %T Oncology Patient Interest in the Use of New Technologies to Manage Their Disease: Cross-Sectional Survey %A Collado-Borrell,Roberto %A Escudero-Vilaplana,Vicente %A Calles,Antonio %A Garcia-Martin,Estela %A Marzal-Alfaro,Belen %A Gonzalez-Haba,Eva %A Herranz-Alonso,Ana %A Sanjurjo-Saez,Maria %+ Hospital General Universitario Gregorio Marañón, Calle de Dr Esquerdo 46, Madrid, 28007, Spain, 34 915867714 ext 477714, vicente.escudero@salud.madrid.org %K eHealth %K app %K information and communication technologies %K oncology patient %D 2018 %7 23.10.2018 %9 Original Paper %J J Med Internet Res %G English %X Background: Information and communication technologies (ICTs) in oncology can revolutionize the medical care of cancer patients. ICTs can promote patients’ empowerment and real-time disease monitoring. There is limited information about the impact of ICTs in cancer patients or their level of interest in using these tools for greater management of their condition. Objective: This study aimed to understand the ICT usage profile in hematology-oncology patients to identify their needs and determine their level of interest in these technologies as a means of managing their disease. Methods: A 28-item questionnaire was drawn up by a multidisciplinary team including pharmacists and oncologists. The questions were organized into 3 blocks, which were as follows: block A—sociodemographic characteristics; block B—use of ICTs when searching for health-related information; and block C—usage preferences for health apps. Hematology-oncology patients receiving treatment between May and July 2017 were included. A paper copy of the questionnaire was handed over to patients in either the day hospital or the pharmaceutical care consultancy in pharmacy services. Results: A total of 650 questionnaires were handed out, with a participation of 94.0% (611/650). Patient sociodemographic characteristics were as follows: mean age was 57.8 years (age range: 19-91). Of 611 participants, 40.7% (249/611) had a university education, and 45.1% (276/611) of participants reported their overall state of health to be good. Results from use of ICTs when searching for health-related information were as follows: 87.1% (532/611) of participants were interested in being informed about health-related matters. Of all participants, 75.5% (532/611) sought information from health professionals and 61.3% (375/611) on the internet. Before going to their doctor’s appointment, 21.8% (133/611) of patients looked up information about their disease or treatment on the internet. This access to the internet rose to 50.9% (311/611) after their first medical appointment with their oncologist. Usage preferences for health apps were as follows: 82.7% (505/611) had a smartphone, whereas 20.3% (124/611) had a health app installed. Overall, 81.5% (498/611) would use an app if their health professional recommended it to them, but 39.6% (242/611) were not willing to pay for it. Conclusions: The hematology-oncology patients showed a great deal of interest in searching for health-related information by means of ICTs, especially using smartphones and apps. The issues that drew the most interest in terms of apps were appointment management, advice on disease management, and communication with health professionals. Free access to these features and the recommendation by a health professional are important factors when it comes to their use. Therefore, the health care provider is a key element in the recommendation of ICTs, providing their knowledge and experience concerning their correct usage. %M 30355554 %R 10.2196/11006 %U http://www.jmir.org/2018/10/e11006/ %U https://doi.org/10.2196/11006 %U http://www.ncbi.nlm.nih.gov/pubmed/30355554 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 4 %N 1 %P e5 %T Implications of Patient Portal Transparency in Oncology: Qualitative Interview Study on the Experiences of Patients, Oncologists, and Medical Informaticists %A Alpert,Jordan M %A Morris,Bonny B %A Thomson,Maria D %A Matin,Khalid %A Brown,Richard F %+ Department of Advertising, University of Florida, Weimer Hall 2093, Gainesville, FL, 32611, United States, 1 352 392 0453, jordan.alpert@ufl.edu %K qualitative research %K electronic health record %K patient portals %K physician patient relationship %K health communication %D 2018 %7 26.03.2018 %9 Original Paper %J JMIR Cancer %G English %X Background: Providing patients with unrestricted access to their electronic medical records through patient portals has impacted patient-provider communication and patients’ personal health knowledge. However, little is known about how patient portals are used in oncology. Objective: The aim of this study was to understand attitudes of the portal’s adoption for oncology and to identify the advantages and disadvantages of using the portal to communicate and view medical information. Methods: In-depth semistructured interviews were conducted with 60 participants: 35 patients, 13 oncologists, and 12 medical informaticists. Interviews were recorded, transcribed, and thematically analyzed to identify critical incidents and general attitudes encountered by participants. Results: Two primary themes were discovered: (1) implementation practices influence attitudes, in which the decision-making and execution process of introducing portals throughout the hospital did not include the input of oncologists. Lack of oncologists’ involvement led to a lack of knowledge about portal functionality, such as not knowing the time period when test results would be disclosed to patients; (2) perceptions of portals as communication tools varies by user type, meaning that each participant group (patients, oncologists, and medical informaticists) had varied opinions about how the portal should be used to transmit and receive information. Oncologists and medical informaticists had difficulty understanding one another’s culture and communication processes in their fields, while patients had preferences for how they would like to receive communication, but it largely depended upon the type of test being disclosed. Conclusions: The majority of patients (54%, 19/35) who participated in this study viewed lab results or scan reports via the portal before being contacted by a clinician. Most were relatively comfortable with this manner of disclosure but still preferred face-to-face or telephone communication. Findings from this study indicate that portal education is needed for both patients and oncologists, especially when portals are implemented across entire health systems since highly specialized areas of medicine may have unique needs and uses. Patient portals in oncology can potentially alter the way diagnoses are delivered and how patients and oncologists communicate. Therefore, communication about the portal should be established during initial consultations so patients can decide whether they want to be informed in such a manner. %M 29581090 %R 10.2196/cancer.8993 %U http://cancer.jmir.org/2018/1/e5/ %U https://doi.org/10.2196/cancer.8993 %U http://www.ncbi.nlm.nih.gov/pubmed/29581090 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 19 %N 8 %P e288 %T “Am I normal?” The Wishes of Patients With Lymphoma to Compare Their Patient-Reported Outcomes With Those of Their Peers %A Oerlemans,Simone %A Arts,Lindy P %A Horevoorts,Nicole J %A van de Poll-Franse,Lonneke V %+ Department of Research, Netherlands Comprehensive Cancer Organisation, Godebaldkwartier 419, PO Box 19079, 3501 DB, Utrecht, 3501 DB, Netherlands, 31 (0) 88 234 6195, s.oerlemans@iknl.nl %K lymphoma %K health-related quality of life %K personalized feedback %K self-care %K access to information %K population-based research %D 2017 %7 15.08.2017 %9 Original Paper %J J Med Internet Res %G English %X Background: Providing feedback to patients on their patient-reported outcomes (PROs) can help patients in monitoring their functioning and symptoms and may help empower them. Objective: The objective of this study was to investigate whether patients with lymphoma wished to receive PRO feedback, including the option to compare their scores with those of their peers, and how this feedback was evaluated. Methods: We invited 64 patients participating in a lymphoma cohort who were eligible for a follow-up questionnaire and gave them the option to receive PRO feedback. Patients completed questions about health-related quality of life (HRQoL) and symptoms. PRO feedback was provided via bar charts. Results: Of the 64 invited patients, 45 participated (response rate 70%) and 36 of those (80%) wished to receive PRO feedback. The vast majority (34/36, 94%) compared their scores with those of a lymphoma reference cohort, and 64% (23/36) compared their score with those of a normative population without cancer. All patients wished to receive feedback on their HRQoL, and 29 (81%) to 33 (92%) wanted feedback on their functioning, fatigue, neuropathy, anxiety, and depressive symptoms. Of the 36 participants wishing to receive PRO feedback, 35 (97%) viewed it as being useful, with reassurance and knowledge about their own functioning in relation to what is “normal” being the most frequently mentioned reasons. Conclusions: A high number of patients with lymphoma wished to receive PRO feedback. Patients reported the comparison of their scores versus a lymphoma reference cohort as most valuable. Further research should investigate whether PRO feedback could increase empowerment and possibly improve HRQoL. %M 28811271 %R 10.2196/jmir.7079 %U http://www.jmir.org/2017/8/e288/ %U https://doi.org/10.2196/jmir.7079 %U http://www.ncbi.nlm.nih.gov/pubmed/28811271 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 5 %N 7 %P e107 %T Patients’ Perspective on Participation in Care With or Without the Support of a Smartphone App During Radiotherapy for Prostate Cancer: Qualitative Study %A Hälleberg Nyman,Maria %A Frank,Catharina %A Langius-Eklöf,Ann %A Blomberg,Karin %A Sundberg,Kay %A Wengström,Yvonne %+ School of Health Sciences, Örebro University, Fakultetsgatan 1, Örebro, 70281, Sweden, 46 1930132, maria.halleberg-nyman@oru.se %K patient participation %K prostate cancer %K radiotherapy %K smartphone %D 2017 %7 26.07.2017 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: Patients with prostate cancer are often cared for as outpatients during radiotherapy, which can be an aggravating circumstance for patient participation. There is a need to evaluate whether an interactive smartphone app could enable participation in care, specifically during treatment for prostate cancer. The interactive app (Interaktor) used in this study is developed in codesign with patients and health care professionals; it includes daily reports of symptoms, a risk assessment model, evidence-based self-care advice, along with the provision of immediate access to clinicians. Objective: The aim of this study was to explore how patients with prostate cancer perceived their participation with or without the support of the smartphone app during radiotherapy. Methods: A total of 28 prostate cancer patients receiving adjuvant radiotherapy were interviewed about their perceived participation in their own care. All the patients interviewed in this study participated in an intervention study where the control group received standard care that comprised having access to a contact nurse to turn to with any concerns during their treatment. In addition to standard care, the patients in the intervention group received the app downloaded in a smartphone. The patients’ age ranged between 57 and 77 years; 17 patients used the smartphone app. The interviews were analyzed with directed qualitative content analysis. Results: The four dimensions of patient participation, which include mutual participation, fight for participation, requirement for participation, and participation in getting basic needs satisfied, were confirmed as valid perspectives in the interviews with the patients with prostate cancer, irrespective of whether they used the smartphone app. However, the patients who had used the smartphone app described it as a facilitating factor, especially for mutual participation. Conclusions: Using innovative ways to communicate with patients, such as an interactive app for symptom management with contact with health care in real time, can successfully help achieve increased patient participation in care. %M 28747294 %R 10.2196/mhealth.6829 %U http://mhealth.jmir.org/2017/7/e107/ %U https://doi.org/10.2196/mhealth.6829 %U http://www.ncbi.nlm.nih.gov/pubmed/28747294 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 6 %N 6 %P e122 %T Reducing Parental Uncertainty Around Childhood Cancer: Implementation Decisions and Design Trade-Offs in Developing an Electronic Health Record-Linked Mobile App %A Marsolo,Keith %A Shuman,William %A Nix,Jeremy %A Morrison,Caroline F %A Mullins,Larry L %A Pai,Ahna LH %+ Division of Biomedical Informatics, Cincinnati Children's Hospital Medical Center, 3333 Burnet Ave, MLC 7024, Cincinnati, OH, 45229, United States, 1 5138030333, keith.marsolo@cchmc.org %K electronic health records %K mobile apps %K uncertainty %K ethnographic design %D 2017 %7 26.06.2017 %9 Original Paper %J JMIR Res Protoc %G English %X Background: Parents of children newly diagnosed with cancer are confronted with multiple stressors that place them at risk for significant psychological distress. One strategy that has been shown to help reduce uncertainty is the provision of basic information; however, families of newly diagnosed cancer patients are often bombarded with educational material. Technology has the potential to help families manage their informational needs and move towards normalization. Objective: The aim of this study was to create a mobile app that pulls together data from both the electronic health record (EHR) and vetted external information resources to provide tailored information to parents of newly diagnosed children as one method to reduce the uncertainty around their child’s illness. This app was developed to be used by families in a National Institutes of Health (NIH)-funded randomized controlled trial (RCT) aimed at decreasing uncertainty and the subsequent psychological distress. Methods: A 2-phase qualitative study was conducted to elicit the features and content of the mobile app based on the needs and experience of parents of children newly diagnosed with cancer and their providers. Example functions include the ability to view laboratory results, look up appointments, and to access educational material. Educational material was obtained from databases maintained by the National Cancer Institute (NCI) as well as from groups like the Children’s Oncology Group (COG) and care teams within Cincinnati Children’s Hospital Medical Center (CCHMC). The use of EHR-based Web services was explored to allow data like laboratory results to be retrieved in real-time. Results: The ethnographic design process resulted in a framework that divided the content of the mobile app into the following 4 sections: (1) information about the patient’s current treatment and other data from the EHR; (2) educational background material; (3) a calendar to view upcoming appointments at their medical center; and (4) a section where participants in the RCT document the study data. Integration with the NCI databases was straightforward; however, accessing the EHR Web services posed a challenge, though the roadblocks were not technical in nature. The lack of a formal, end-to-end institutional process for requesting Web service access and a mechanism to shepherd the request through all stages of implementation proved to be the biggest barrier. Conclusions: We successfully deployed a mobile app with a custom user interface that can integrate with the EHR to retrieve laboratory results and appointment information using vendor-provided Web services. Developers should expect to face hurdles when integrating with the EHR, but many of them can be addressed with frequent communication and thorough documentation. Executive sponsorship is also a key factor for success. Trial Registration: ClinicalTrials.gov NCT02505165; https://clinicaltrials.gov/ct2/show/NCT02505165 (Archived by WebCite at http://www.Webcitation.org/6r9ZSUgoT) %M 28652227 %R 10.2196/resprot.7523 %U http://www.researchprotocols.org/2017/6/e122/ %U https://doi.org/10.2196/resprot.7523 %U http://www.ncbi.nlm.nih.gov/pubmed/28652227 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 19 %N 6 %P e189 %T The Role of Web-Based Health Information in Help-Seeking Behavior Prior to a Diagnosis of Lung Cancer: A Mixed-Methods Study %A Mueller,Julia %A Jay,Caroline %A Harper,Simon %A Todd,Chris %+ School of Health Sciences, University of Manchester, Kilburn Building, LF1, Oxford Road, Manchester, M13 PL, United Kingdom, 44 161 275 6239, julia.mueller@manchester.ac.uk %K help seeking %K online health information %K health information seeking %K lung cancer %K symptom appraisal %D 2017 %7 08.06.2017 %9 Original Paper %J J Med Internet Res %G English %X Background: Delays to diagnosis in lung cancer can lead to reduced chance of survival, and patients often wait for several months before presenting symptoms. The time between first symptom recognition until diagnosis has been theorized into three intervals: symptom appraisal, help-seeking, and diagnostic interval (here: “pathway to diagnosis”). Interventions are needed to reduce delays to diagnosis in lung cancer. The Web has become an important lay health information source and could potentially play a role in this pathway to diagnosis. Objective: Our overall aim was to gain a preliminary insight into whether Web-based information plays a role in the pathway to diagnosis in lung cancer in order to assess whether it may be possible to leverage this information source to reduce delays to diagnosis. Methods: Patients diagnosed with lung cancer in the 6 months before study entry completed a survey about whether (and how, if yes) they had used the Web to appraise their condition prior to diagnosis. Based on survey responses, we purposively sampled patients and their next-of-kin for semistructured interviews (24 interviews; 33 participants). Interview data were analyzed qualitatively using Framework Analysis in the context of the pathway to diagnosis model. Results: A total of 113 patients completed the survey (age: mean 67.0, SD 8.8 years). In all, 20.4% (23/113) reported they or next-of-kin had researched their condition online before the diagnosis. The majority of searches (20/23, 87.0%) were conducted by or with the help of next-of-kin. Interview results suggest that patients and next-of-kin perceived an impact of the information found online on all three intervals in the time to diagnosis. In the appraisal interval, participants used online information to evaluate symptoms and possible causes. In the help-seeking interval, the Web was used to inform the decision of whether to present to health services. In the diagnostic interval, it was used to evaluate health care professionals’ advice, to support requests for further investigation of symptoms, and to understand medical jargon. Within this interval, we identified two distinct subintervals (before/after relevant diagnostic tests were initiated), in which the Web reportedly played different roles. Conclusions: Because only 20.4% of the sample reported prediagnosis Web searches, it seems the role of the Web before diagnosis of lung cancer is at present still limited, but this proportion is likely to increase in the future, when barriers such as unfamiliarity with technology and unwillingness to be informed about one’s own health are likely to decrease. Participants’ perceptions suggest that the Web can have an impact on all three intervals in the pathway to diagnosis. Thus, the Web may hold the potential to reduce delays in the diagnostic process, and this should be explored in future research and interventions. Our results also suggest a division of the diagnostic interval into two subintervals may be useful. %M 28596146 %R 10.2196/jmir.6336 %U http://www.jmir.org/2017/6/e189/ %U https://doi.org/10.2196/jmir.6336 %U http://www.ncbi.nlm.nih.gov/pubmed/28596146 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 3 %N 1 %P e6 %T Deconstructing Cancer Patient Information Seeking in a Consumer Health Library Toward Developing a Virtual Information Consult for Cancer Patients and Their Caregivers: A Qualitative, Instrumental Case Study %A Papadakos,Janet %A Trang,Aileen %A Cyr,Alaina B %A Abdelmutti,Nazek %A Giuliani,Meredith E %A Snow,Michelle %A McCurdie,Tara %A Pulandiran,Menaka %A Urowitz,Sara %A Wiljer,David %+ Cancer Education Program, Princess Margaret Cancer Centre, University Health Network, Princess Margaret Cancer Centre, ELLICSR B-PMB 130, 585 University Avenue, Toronto, ON, M5G 2C4, Canada, 1 416 5817679, janet.papadakos@uhn.ca %K patient education %K information-seeking behavior %K health literacy %K Internet %K consumer health information %D 2017 %7 24.05.2017 %9 Original Paper %J JMIR Cancer %G English %X Background: Cancer patients and their caregivers want information about their disease and are interested in finding health information online. Despite the abundance of cancer information online, it is often fragmented, its quality is highly variable, and it can be difficult to navigate without expert-level knowledge of the cancer system. The Patient & Family Library at the Princess Margaret Cancer Centre offers a broad collection of high-quality cancer health information and staff are available to help patrons refine their questions and explore information needs that they may not have considered. Objective: The purpose of this research study was to deconstruct patrons’ information-seeking behaviors in the library to assess the feasibility of replicating the services provided in the library through a Web app, extending the service beyond the walls of the cancer centre. The specific aims of this research were to understand (1) how patrons approach information seeking in the library (interface design), (2) how patrons communicate their informational needs (information categorization and metadata requirements), and (3) what resources are provided to address the patrons’ information needs (collection development). Methods: We employed a qualitative, instrumental case study to deconstruct patrons’ health information-seeking behavior. The study population included patients, the librarian, and library volunteers. Ethnographic observation was conducted at the library over 3 days and key informant interviews with library staff were conducted to address the first aim. A closed card-sorting activity was conducted to address the second aim and the library shift logs and Search Request Forms (SRFs) were reviewed to address the third aim. Results: A total of 55 interactions were recorded during the ethnographic observation and nine semistructured interviews were conducted during the key informant interviews. Seven library patron personas were identified: (1) Newbie, (2) Seasoned, (3) Direct, (4) Window Shopper, (5) Collector, (6) Information Seeker, and (7) Distressed. A total of 83 participants completed the closed card-sorting exercise. The participants’ conceptual clusters within the similarity matrix overlapped with the groupings created by the librarian, with a few differences. A total of 161 entries in the library shift log and 65 SRFs were analyzed to determine what resources were given to patrons. Most resources that patrons received were available online (61%), although almost half of these required special access (47%). Conclusions: The study findings suggest it is possible to replicate library functions in a Web app with a few exceptions that cannot be replicated online. These elements include access to journal articles or other content behind paywalls and the librarian’s ability to encourage further discussion through empathy and active listening. Discussion with the librarian could serve to refine and predict needs through observing information seekers and to provide immediate connection to spiritual care and psychosocial support for patrons in distress. %M 28539305 %R 10.2196/cancer.6933 %U http://cancer.jmir.org/2017/1/e6/ %U https://doi.org/10.2196/cancer.6933 %U http://www.ncbi.nlm.nih.gov/pubmed/28539305 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 2 %N 2 %P e11 %T Like or Dislike? Impact of Facebook on Ewing Sarcoma Treatment %A Ruckenstuhl,Paul %A Schippinger,Michael %A Liebmann,Paul %A Leithner,Andreas %A Bernhardt,Gerwin %+ Department of Orthopedic Surgery, Medical University Graz, Auenbruggerplatz 5, Graz, 8036, Austria, 43 6641344553, paul.ruckenstuhl@gmx.at %K social media %K Facebook %K Ewing sarcoma %K social media networking %D 2016 %7 25.08.2016 %9 Original Paper %J JMIR Cancer %G English %X Background: An increasing number of patients are raising their voices in online forums to exchange health-related information. Facebook is the leading social media platform with more than 1 billion international daily users recorded in the summer of 2015. Facebook has a dynamic audience and is utilized in a number of ways, discussing medical issues being one of them. Ewing sarcoma mainly affects teenagers and young adults. Additionally, many individuals within this age group are regular users of Facebook. However, little is known about the impact of this modern way of communication via Web-based platforms on patients with Ewing sarcoma and their social environment. Objective: The aim of this study was to analyze and compare Ewing sarcoma patients’ and relatives’ behavior on Facebook to draw conclusions regarding the impact of Facebook on Ewing sarcoma treatment. Methods: We examined a Facebook group named “Ewing Sarcoma Awareness” that is used to exchange information for both patients and relatives regarding Ewing sarcoma. A self-designed questionnaire was used to compare patients’ and relatives’ answers. Additionally, we analyzed all processes (posts, likes, threads, links) in the group for 6 consecutive months. A total of 65 members of the Facebook group (26 patients, 39 relatives) out of 2227 international group members participated in our study. Results: More than 70% (46/65) of all participants reported that they use the group Ewing Sarcoma Awareness as a source of information about Ewing sarcoma. Of the participants, 89% (58/65) agreed on our scale from a little to a lot that being in contact with other affected people through the group makes it easier to handle the diagnosis. In this study, 20% (13/65) of all participants reported that the group affected their choice of treatment and 15% (10/65) of participants were influenced in the selection of their specialist. Regarding the recommendation of the Facebook group toward other people, significant differences (P=.003) were found comparing patients’ and relatives’ results. During the last 6 months most activities in the group concerned sharing destiny and handling the diagnosis. Conclusions: The Facebook group Ewing Sarcoma Awareness has a relevant impact on group members regarding their choice of treatment. Moreover, participants turn toward the group to receive mental and emotional support in everyday life. Statements made within the group are in part questionable from a medical point of view and the impact made by these statements on patients’ care requires further evaluation. %M 28410188 %R 10.2196/cancer.5367 %U http://cancer.jmir.org/2016/2/e11/ %U https://doi.org/10.2196/cancer.5367 %U http://www.ncbi.nlm.nih.gov/pubmed/28410188 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 18 %N 7 %P e206 %T An Integrated Process and Outcome Evaluation of a Web-Based Communication Tool for Patients With Malignant Lymphoma: Randomized Controlled Trial %A van Bruinessen,Inge Renske %A van Weel-Baumgarten,Evelyn M %A Gouw,Hans %A Zijlstra,Josée M %A van Dulmen,Sandra %+ NIVEL Netherlands Institute for Health Services Research, Otterstraat 118-124, Utrecht, 3500 BN, Netherlands, 31 302729680, i.vanbruinessen@nivel.nl %K RCT %K communication aid %K Web-based intervention %K self-help application %K hematologic malignancies %K lymphoma cancer %K patient participation %D 2016 %7 29.07.2016 %9 Original Paper %J J Med Internet Res %G English %X Background: The complex nature of the medical dialogue and the often emotional context in cancer care present challenges to health care professionals (HCPs) and patients. Patients are increasingly expected to be informed participants and to be able to make conscious decisions, which they often find very difficult. In an attempt to support patients with malignant lymphoma in clinical communication, we developed a stand-alone, Web-based intervention called “PatientTIME.” The development of PatientTIME was based on a participatory intervention mapping framework. Its primary aim is to boost patients’ self-efficacy in patient-professional communication (ie, their confidence when interacting with their HCP). Patients can use this intervention before their hospital visit to prepare for their clinical consultation. PatientTIME is fully automated and use is patient-initiated. Objective: The aim of this study was to evaluate if and in what way patients benefit from PatientTIME and if it enhances their confidence in clinical communication. Methods: The intervention was evaluated in a closed randomized controlled trial with continuous recruitment (using online and offline methods to reach potential participants) and data collection. In accordance with the Medical Research Council guidance, we started with a process evaluation. Subsequently, an outcome evaluation was performed focusing on the patients’ perceived confidence in communication with their HCP, measured with the validated PEPPI questionnaire at baseline and at 3 months after participation. Process and outcome data were obtained through Web-based questionnaires, log files (automatically generated files mapping the interactions between program and users), and a logbook (comprising a record of actions and interactions kept by the researchers). Participants were not blinded. A total of 146 patients registered online, of whom 97 gave their informed consent and were assigned at random to the control group (N=34) or 1 of the 2 intervention groups (N=63). Ultimately 87/97 (90%) of these patients actually participated in the study, producing 87 datasets for analysis. Results: More than half of the intervention group patients reported that the intervention helped them prepare for a clinical consultation; it created awareness about the importance of communication and reinforced their existing communication skills. In the postvisit test, the control group showed a small, nonsignificant improvement in perceived communication efficacy. The intervention group showed a significant improvement in perceived efficacy. However, the interaction effect was not significant, indicating that the improvement solely as a result of the intervention may not be significant. Conclusions: A considerable number of patients reported that PatientTIME did provide support. We found a trend indicating that in the long run, patients with access to PatientTIME scored better on the perceived efficacy scale than patients without access. However, at this stage we cannot conclude that PatientTIME improves patients’ confidence when interacting with HCPs. ClinicalTrial: Netherlands National Trial Register (NTR): 3779; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=3779 (archived by WebCite at http://www.webcitation.org/6iztxJ5Nt) %M 27473173 %R 10.2196/jmir.5877 %U http://www.jmir.org/2016/7/e206/ %U https://doi.org/10.2196/jmir.5877 %U http://www.ncbi.nlm.nih.gov/pubmed/27473173 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 18 %N 6 %P e120 %T Web Conversations About Complementary and Alternative Medicines and Cancer: Content and Sentiment Analysis %A Mazzocut,Mauro %A Truccolo,Ivana %A Antonini,Marialuisa %A Rinaldi,Fabio %A Omero,Paolo %A Ferrarin,Emanuela %A De Paoli,Paolo %A Tasso,Carlo %+ CRO Aviano National Cancer Institute, Scientific and Patient Library, via Franco Gallini 2, Aviano, 33081, Italy, 39 0434659709, mmazzocut@cro.it %K complementary and alternative medicine %K Internet %K neoplasms %K health information online %K website content analysis %K barriers to patient-doctor communication %K misinformation %K sentiment analysis %K data mining %D 2016 %7 16.06.2016 %9 Original Paper %J J Med Internet Res %G English %X Background: The use of complementary and alternative medicine (CAM) among cancer patients is widespread and mostly self-administrated. Today, one of the most relevant topics is the nondisclosure of CAM use to doctors. This general lack of communication exposes patients to dangerous behaviors and to less reliable information channels, such as the Web. The Italian context scarcely differs from this trend. Today, we are able to mine and analyze systematically the unstructured information available in the Web, to get an insight of people’s opinions, beliefs, and rumors concerning health topics. Objective: Our aim was to analyze Italian Web conversations about CAM, identifying the most relevant Web sources, therapies, and diseases and measure the related sentiment. Methods: Data have been collected using the Web Intelligence tool ifMONITOR. The workflow consisted of 6 phases: (1) eligibility criteria definition for the ifMONITOR search profile; (2) creation of a CAM terminology database; (3) generic Web search and automatic filtering, the results have been manually revised to refine the search profile, and stored in the ifMONITOR database; (4) automatic classification using the CAM database terms; (5) selection of the final sample and manual sentiment analysis using a 1-5 score range; (6) manual indexing of the Web sources and CAM therapies type retrieved. Descriptive univariate statistics were computed for each item: absolute frequency, percentage, central tendency (mean sentiment score [MSS]), and variability (standard variation σ). Results: Overall, 212 Web sources, 423 Web documents, and 868 opinions have been retrieved. The overall sentiment measured tends to a good score (3.6 of 5). Quite a high polarization in the opinions of the conversation partaking emerged from standard variation analysis (σ≥1). In total, 126 of 212 (59.4%) Web sources retrieved were nonhealth-related. Facebook (89; 21%) and Yahoo Answers (41; 9.7%) were the most relevant. In total, 94 CAM therapies have been retrieved. Most belong to the “biologically based therapies or nutrition” category: 339 of 868 opinions (39.1%), showing an MSS of 3.9 (σ=0.83). Within nutrition, “diets” collected 154 opinions (18.4%) with an MSS of 3.8 (σ=0.87); “food as CAM” overall collected 112 opinions (12.8%) with a MSS of 4 (σ=0.68). Excluding diets and food, the most discussed CAM therapy is the controversial Italian “Di Bella multitherapy” with 102 opinions (11.8%) with an MSS of 3.4 (σ=1.21). Breast cancer was the most mentioned disease: 81 opinions of 868. Conclusions: Conversations about CAM and cancer are ubiquitous. There is a great concern about the biologically based therapies, perceived as harmless and useful, under-rating all risks related to dangerous interactions or malnutrition. Our results can be useful to doctors to be aware of the implications of these beliefs for the clinical practice. Web conversation exploitation could be a strategy to gain insights of people’s perspective for other controversial topics. %M 27311444 %R 10.2196/jmir.5521 %U http://www.jmir.org/2016/6/e120/ %U https://doi.org/10.2196/jmir.5521 %U http://www.ncbi.nlm.nih.gov/pubmed/27311444 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 4 %N 2 %P e66 %T Experiences With a Self-Reported Mobile Phone-Based System Among Patients With Colorectal Cancer: A Qualitative Study %A Drott,Jenny %A Vilhelmsson,Maria %A Kjellgren,Karin %A Berterö,Carina %+ Division of Nursing Science, Department of Medical and Health Sciences, Linköping University, IMH, Linköping, 581 83, Sweden, 46 013 286820, Jenny.Drott@liu.se %K cancer %K conventional content analysis %K informatics technology systems %K mHealth %K self-reported mobile phone-based system %K symptom monitoring %D 2016 %7 09.06.2016 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: In cancer care, mobile phone-based systems are becoming more widely used in the assessment, monitoring, and management of side effects. Objective: To explore the experiences of patients with colorectal cancer on using a mobile phone-based system for reporting neurotoxic side effects. Methods: Eleven patients were interviewed (ages 44-68 years). A semistructured interview guide was used to perform telephone interviews. The interviews were transcribed verbatim and analyzed with qualitative content analysis. Results: The patients' experiences of using a mobile phone-based system were identified and constructed as: “being involved,” “pacing oneself,” and “managing the questions.” “Being involved” refers to their individual feelings. Patients were participating in their own care by being observant of the side effects they were experiencing. They were aware that the answers they gave were monitored in real time and taken into account by health care professionals when planning further treatment. “Pacing oneself” describes how the patients can have an impact on the time and place they choose to answer the questions. Answering the questionnaire was easy, and despite the substantial number of questions, it was quickly completed. “Managing the questions” pointed out that the patients needed to be observant because of the construction of the questions. They could not routinely answer all the questions. Patients understood that side effects can vary during the cycles of treatment and need to be assessed repeatedly during treatment. Conclusions: This mobile phone-based system reinforced the patients’ feeling of involvement in their own care. The patients were comfortable with the technology and appreciated that the system was not time consuming. %M 27282257 %R 10.2196/mhealth.5426 %U http://mhealth.jmir.org/2016/2/e66/ %U https://doi.org/10.2196/mhealth.5426 %U http://www.ncbi.nlm.nih.gov/pubmed/27282257 %0 Journal Article %@ 1929-0748 %I JMIR Publications Inc. %V 5 %N 2 %P e88 %T A Decision Aid for Women Considering Neoadjuvant Systemic Therapy for Operable Invasive Breast Cancer: Development and Protocol of a Phase II Evaluation Study (ANZ1301 DOMINO) %A Zdenkowski,Nicholas %A Butow,Phyllis %A Hutchings,Elizabeth %A Douglas,Charles %A Coll,Joseph R %A Boyle,Frances M %+ Northern Clinical School, Faculty of Medicine, University of Sydney, Patricia Ritchie Centre for Cancer Care and Research, 25 Rocklands Rd, North Sydney, 2060, Australia, 61 249850134, nick.zdenkowski@newcastle.edu.au %K breast neoplasm %K decision aid %K neoadjuvant %K chemotherapy %K protocol %D 2016 %7 20.05.2016 %9 Protocol %J JMIR Res Protoc %G English %X Background: Neoadjuvant systemic therapy is offered to selected women with large and/or highly proliferative operable breast cancers. This option adds further complexity to an already complex breast cancer treatment decision tree. Patient decision aids are an established method of increasing patient involvement and knowledge while decreasing decisional conflict. There is currently no decision aid available for women considering neoadjuvant systemic therapy. Objective: We aimed to develop a decision aid for women diagnosed with operable breast cancer and considered suitable for neoadjuvant systemic therapy, and the protocol for a multicenter pre-post study evaluating the acceptability and feasibility of the decision aid. Methods: The decision aid was developed through literature review, expert advisory panel, adherence to the International Patient Decision Aid Standards, and iterative review. The protocol for evaluation of the decision aid consists of the following: eligible women will undertake a series of questionnaires prior to and after using the decision aid. The primary endpoint is decision aid acceptability to patients and investigators and the feasibility of use. Secondary endpoints include change in decisional conflict, participant knowledge, and information involvement preference. Feasibility is defined as the proportion of eligible participants who use the decision aid to help inform their treatment decision. Results: This study has recruited 29 out of a planned 50 participants at four Australian sites. A 12-month recruitment period is expected with a further 12-months follow-up. Conclusions: The decision aid has the potential to allow patients with operable breast cancer, who have been offered neoadjuvant systemic therapy, decreased decisional conflict, and greater involvement in the decision. If this study finds that an online decision aid is feasible and acceptable, it will be made widely available for routine clinical practice. Trial Registration: Australian and New Zealand Clinical Trials Registry ACTRN12614001267640; http://www.anzctr.org.au/TrialSearch.aspx?searchTxt=ACTRN12614001267640&isBasic=True (Archived by WebCite at http://www.webcitation.org/6gh7BPZdG) %M 27207563 %R 10.2196/resprot.5641 %U http://www.researchprotocols.org/2016/2/e88/ %U https://doi.org/10.2196/resprot.5641 %U http://www.ncbi.nlm.nih.gov/pubmed/27207563 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 11 %P e270 %T Empowerment of Cancer Survivors Through Information Technology: An Integrative Review %A Groen,Wim G %A Kuijpers,Wilma %A Oldenburg,Hester SA %A Wouters,Michel WJM %A Aaronson,Neil K %A van Harten,Wim H %+ The Netherlands Cancer Institute, Division of Psychosocial Research and Epidemiology, Plesmanlaan 121, 1066 CX, Amsterdam, , Netherlands, 31 205122861, w.v.harten@nki.nl %K review %K neoplasms %K Internet %K technology %K health education %K chronic disease %K power (psychology) %D 2015 %7 27.11.2015 %9 Review %J J Med Internet Res %G English %X Background: Patient empowerment may be an effective approach to strengthen the role of cancer survivors and to reduce the burden on health care. However, it is not well conceptualized, notably in oncology. Furthermore, it is unclear to what extent information technology (IT) services can contribute to empowerment of cancer survivors. Objective: We aim to define the conceptual components of patient empowerment of chronic disease patients, especially cancer survivors, and to explore the contribution of existing and new IT services to promote empowerment. Methods: Electronic databases were searched to identify theoretical and empirical articles regarding empowerment. We extracted and synthesized conceptual components of patient empowerment (ie, attributes, antecedents, and consequences) according to the integrated review methodology. We identified recent IT services for cancer survivors by examining systematic reviews and a proposed inventory of new services, and we related their features and effects to the identified components of empowerment. Results: Based on 26 articles, we identified five main attributes of patient empowerment: (1) being autonomous and respected, (2) having knowledge, (3) having psychosocial and behavioral skills, (4) perceiving support from community, family, and friends, and (5) perceiving oneself to be useful. The latter two were specific for the cancer setting. Systematic reviews of IT services and our additional inventory helped us identify five main categories: (1) educational services, including electronic survivorship care plan services, (2) patient-to-patient services, (3) electronic patient-reported outcome (ePRO) services, (4) multicomponent services, and (5) portal services. Potential impact on empowerment included knowledge enhancement and, to a lesser extent, enhancing autonomy and skills. Newly developed services offer promising and exciting opportunities to empower cancer survivors, for instance, by providing tailored advice for supportive or follow-up care based on patients' input. Conclusions: We identified five main components of empowerment and showed that IT services may especially contribute to empowerment by providing knowledge. The components of empowerment could be used to develop IT services for cancer survivors. It is important to take into account patients’ needs, follow up on these needs, and create a service that is attractive and easy to use. %M 26614438 %R 10.2196/jmir.4818 %U http://www.jmir.org/2015/11/e270/ %U https://doi.org/10.2196/jmir.4818 %U http://www.ncbi.nlm.nih.gov/pubmed/26614438 %0 Journal Article %@ 2369-1999 %I JMIR Publications Inc. %V 1 %N 2 %P e10 %T The Impact of Advice Seekers’ Need Salience and Doctors’ Communication Style on Attitude and Decision Making: A Web-Based Mammography Consultation Role Play %A Fissler,Tim %A Bientzle,Martina %A Cress,Ulrike %A Kimmerle,Joachim %+ Leibniz-Institut fuer Wissensmedien, Knowledge Media Research Center, Knowledge Construction Lab, Schleichstrasse 6, Tuebingen, , Germany, 49 7071 979 363, j.kimmerle@iwm-tuebingen.de %K communication style %K needs %K need salience %K attitude %K decision-making %K mammography screening %K online consultation %D 2015 %7 08.09.2015 %9 Original Paper %J JMIR Cancer %G English %X Background: Patients and advice seekers come to a medical consultation with typical needs, and physicians require adequate communication skills in order to address those needs effectively. It is largely unclear, however, to what extent advice seekers’ attitudes toward a medical procedure or their resulting decisions are influenced by a physician’s communication that ignores or explicitly takes these needs into account. Objective: This experimental study tested how advice seekers’ salient needs and doctor’s communication styles influenced advice seekers’ attitudes toward mammography screening and their decision whether or not to participate in this procedure. Methods: One hundred women (age range 20-47 years, mean 25.22, SD 4.71) participated in an interactive role play of an online consultation. During the consultation, a fictitious, program-controlled physician provided information about advantages and disadvantages of mammography screening. The physician either merely communicated factual medical information or made additional comments using a communication style oriented toward advice seekers’ typical needs for clarity and well-being. Orthogonal to this experimental treatment, participants’ personal needs for clarity and for well-being were either made salient before or after the consultation with a needs questionnaire. We also measured all participants’ attitudes toward mammography screening and their hypothetical decisions whether or not to participate before and after the experiment. Results: As assumed, the participants expressed strong needs for clarity (mean 4.57, SD 0.42) and for well-being (mean 4.21, SD 0.54) on 5-point Likert scales. Making these needs salient or not revealed significant interaction effects with the physician’s communication style regarding participants’ attitude change (F1,92=7.23, P=.009, η2=.073) and decision making (F1,92=4.43, P=.038, η2=.046). Those participants whose needs were made salient before the consultation responded to the physician’s communication style, while participants without salient needs did not. When the physician used a need-oriented communication style, those participants with salient needs had a more positive attitude toward mammography after the consultation than before (mean 0.13, SD 0.54), while they changed their attitude in a negative direction when confronted with a purely fact-oriented communication style (mean −0.35, SD 0.80). The same applied to decision modification (need-oriented: mean 0.10, SD 0.99; fact-oriented: mean −0.30, SD 0.88). Conclusions: The findings underline the importance of communicating in a need-oriented style with patients and advice seekers who are aware of their personal needs. Ignoring the needs of those people appears to be particularly problematic. So physicians’ sensitivity for advice seekers’ currently relevant needs is essential. %M 28410160 %R 10.2196/cancer.4279 %U http://cancer.jmir.org/2015/2/e10/ %U https://doi.org/10.2196/cancer.4279 %U http://www.ncbi.nlm.nih.gov/pubmed/28410160 %0 Journal Article %@ 2369-1999 %I JMIR Publications Inc. %V 1 %N 1 %P e6 %T Age-Related Use and Perceptions of eHealth in Men With Prostate Cancer: A Web-Based Survey %A Rising,Camella J %A Bol,Nadine %A Kreps,Gary L %+ Center for Health and Risk Communication, Department of Communication, George Mason University, 4400 University Drive, MSN 3D6, Fairfax, VA, 22030, United States, 1 703 993 1090, crising@gmu.edu %K consumer health information %K prostate cancer %K age groups %K information-seeking behavior %K social support %K psychosocial aspects %D 2015 %7 25.06.2015 %9 Original Paper %J JMIR Cancer %G English %X Background: Men with prostate cancer require ample information and support along the continuum of care, and eHealth is one way to meet such critical information and support needs. Currently, evidence about how age influences use and perceptions about prostate cancer eHealth information and support is lacking. Objective: The aim of this paper is to explore use and perceptions about eHealth among men living with prostate cancer. Specifically, we aimed to analyze men with prostate cancer by age-specific cohorts to identify potential age-related differences in use and perceptions about prostate cancer eHealth information. Methods: We used survey methodology to examine how men under 65 years old with prostate cancer differ from those aged 65 years old or older in use and perceptions about prostate cancer eHealth information and support (n=289). Results: We found that men in the younger cohort used the Internet more often to be informed about treatment options (P=.04) and to learn more about staging/grading (P=.01) than men in the older cohort. Results also showed comparatively greater use of online prostate cancer information for emotional support and encouragement by the younger as compared to the older cohort (P=.001). Furthermore, the older cohort reported more negative psychosocial effects of eHealth (eg, more anxious, depressed) than younger men (P=.002). We also found that as a result of more frequent Internet use, younger men experienced more positive psychosocial effects (eg, more informed, in control) from accessing information about prostate cancer through eHealth channels (b=-0.10, 95% CI -0.28 to 0). Conclusions: Men with prostate cancer have different information and support needs; our findings suggest that these needs might vary by age. Future research is needed to unravel age-related factors underlying these differences to be better able to tailor prostate cancer eHealth information to men’s information and support needs. %M 28410165 %R 10.2196/cancer.4178 %U http://www.jmir.org/2015/1/e6/ %U https://doi.org/10.2196/cancer.4178 %U http://www.ncbi.nlm.nih.gov/pubmed/28410165 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 5 %P e132 %T The Cancer Experience Map: An Approach to Including the Patient Voice in Supportive Care Solutions %A Hall,Leslie Kelly %A Kunz,Breanne F %A Davis,Elizabeth V %A Dawson,Rose I %A Powers,Ryan S %+ Healthwise, 2601 N. Bogus Basin Road, Boise, ID, 83702, United States, 1 2083451161, bkunz@healthwise.org %K mHealth %K patient participation %K neoplasm %K public policy %K Internet intervention %K cancer survivors %K online interventions %D 2015 %7 28.05.2015 %9 Viewpoint %J J Med Internet Res %G English %X The perspective of the patient, also called the “patient voice”, is an essential element in materials created for cancer supportive care. Identifying that voice, however, can be a challenge for researchers and developers. A multidisciplinary team at a health information company tasked with addressing this issue created a representational model they call the “cancer experience map”. This map, designed as a tool for content developers, offers a window into the complex perspectives inside the cancer experience. Informed by actual patient quotes, the map shows common overall themes for cancer patients, concerns at key treatment points, strategies for patient engagement, and targeted behavioral goals. In this article, the team members share the process by which they created the map as well as its first use as a resource for cancer support videos. The article also addresses the broader policy implications of including the patient voice in supportive cancer content, particularly with regard to mHealth apps. %M 26022846 %R 10.2196/jmir.3652 %U http://www.jmir.org/2015/5/e132/ %U https://doi.org/10.2196/jmir.3652 %U http://www.ncbi.nlm.nih.gov/pubmed/26022846